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Posted 12/12/2011 in Latest News | 237 Comments

Prof Clare J. Fowler

Prof Clare J. Fowler

Welcome to this website, giving the background to Fowler’s syndrome, the commonest cause of urinary retention in young women. It is hoped that this will be a useful way of exchanging views and experiences.

Remember please to keep your comments polite at all times.

Also the site will be moderated by the 3 nurses who know more about this condition than anyone else in the world!


  1. Fowler

    Good news, the paper from the Uro-Neurology team “The possible role of opiates in women with chronic urinary retention” has been accepted by the Journal of Urology and is tentatively scheduled for publication in August 2012.

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    admin reply:

    Thank you for your update Prof Fowler and Dr Panicker but may I ask why did it take so long?

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    Baily reply:

    I recently had a baby I am currently 7 weeks post partum. A week after I was unable to urinate on my own. I have been having to have a catheter put in to drain my bladder. My urologist took my dynamics to see what was going on. They are sending me to a neurologist because my brain isn’t telling my bladder to retract the muscle just sits here. I want to prepare myself for questions when I go to the neurologist. I am accepting the fact this could become a lifelong thing. I recently stumbled upon fowlers syndrome after looking up my condition online. Any insight as to what this could be …

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    admin reply:

    In fact women with FS who go into retention after child birth are the ones who tend to recover voiding – unknown way – so there’s reason to hope.
    Ask your neurologist ‘is this FS’? it sounds like it. Most UK neurologists know about it and then you need to get a referral to a urologist who does neuromodulation. Did you have a measurement of your urethral pressure as part of urodynamics?

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    Claire reply:

    Hi, I am a 26 year old women have stumbled upon this blog after suffering with urinary problems for around two months. I am yet to approach my GP again, for further investigations, but plan to after I finish this semester at university.
    Initially, I assumed that my symptoms were related to a UTI (I work in gynae clinic – so dipped my urine and was positive for leukocytes). However, as I had no pain related to infection, I did not request antibiotics straight away. Over a period of the next four weeks, symptoms of frequency increased to include nocturia, coinciding with hesitancy and retention (not diagnosed medically, but my bladder never felt completely emptied). I would also have occasional episodes of very slight urinary incontinence after passing water, if I did not make enough effort to double void.
    Eventually, I visited my GP – this time dipstick was positive for both nitrates and leukocytes, and I was give a course of antibiotics.
    Upon finishing these, I still had the same symptoms that I’d experienced before minus frequency and occasional incontinence. I dropped a sample in to my GP to be sent to the lab, and this time the MSU was NAD.
    Almost every time I have to pass water, I have to sit for an extended period of time and alternate between rocking and relaxing in order to start the flow of urine off. Sometimes, the flow will seem normal, but usually it is intermittent and weak. I will almost always experience the sensation of incomplete emptying, and will either have to sit (if i have time to) for longer, or get up and take a walk around, before I can relieve myself some more. I am sure that I retain water every time after I have passed, and attributed the recent UTI to this. I do not have any pain associated with my symptoms, but often feel frustration at being unable to pass water quick enough to relieve the discomfort when I feel the ache from a full bladder.
    Historically, I have had little problems with my bladder – I did go through a spell of frequent post-coital UTI’s, when I was in my late teens, but this seemed to have resolved itself to an infrequent problem now. However, I am currently abstaining from intercourse, giving me even more reason to attribute the recent UTI to urinary retention.
    I have delivered one baby vaginally (5 years ago), and do frequent pelvic floor exercises (the result of sitting in urogynae clinics!), and although it wasn’t extremely recent, I had swabs taken around 3 months ago, and received no remarks about muscle weakness. I also had an USS, prior to swabs, to check for an ovarian cyst (I experienced cystic twinges frequently, and therefore felt that I could identify them), of which I did have two (both less than 5cm); however, I’m certain that these were caused by the Mirena coil, – upon removal, I have experienced no such twinges. I also have a diagnosis of PCOS and experience mild hirsutism only (my BMI is less than 25).
    I understand that for a diagnosis of anything, I would need to visit my GP so that appropriate referrals and investigations could be undertaken. But, I would just like to ask whether, in your opinion, my symptoms are typical of those associated with the onset of FS?
    Many thanks.

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    February 9th, 2012 at 12:26 pm
  2. Fowler

    Its like such alot of things, the speed at which you get something done dosnt necessarily reflect its importance.

    Lets hope this is the start of a lively, helpful blog site.

    February 9th, 2012 at 12:38 pm
  3. janice shepherd

    I am not to sure if I have this condition or not, I first noticed the problem years ago when I was retaining water, after having 4children this seem to have stopped and 10 year ago I could not pass water and went in to hospital for a widening of my Urethra, this worked well until last year when I stop passing water again, somehow it started to come back after a lot of tummy pressing. If I press my tummy in the right area I can pee sort of pushing it out. After a while the sensation to pee came back but, I do not seem to pass enough water now and have to go to the toilet after every drink and can sometimes wet/dribble. How ever,during the night time I can pass water over 10 times and this stop me sleeping. Another thing I have noticed I am very thirsty all the time, I can drink 2 pints of water during the night if I am not careful, I try and limit 1 cup going to bed with me but then wake up so thirsty I have 3 drinks one after another. My Gp has said I am type 2 diabetic and I take Tramadol for pain not to sure sure if this effects my problems. It is a strange one I know, I cannot pee, I can pee I don’t pee enough then I dribble could this be Fowlers illness please advise

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    admin reply:

    There are several things about your history which make me doubt this is FS – because the sphincter is so tight abdominal pressure doesn’t usually help and the night time frequency is very odd. The being thirsty all the time is likely to be Type 2 diabetes -perhaps your blood glucose well controlled. My suspicions are about the tramadol – how much how often? If you look on the website there is a section on FS and opiates and I believe there is a strong interaction. You might have a bit of the sphincter abnormality and the tramadol tips the balance.

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    May 14th, 2012 at 12:05 am
  4. Poppy

    Hello, I am a 21 year old who since having gynae surgery 3 months ago, keeps altering between retention and urinary incontinence. For the time being, I am using ISC several times a day, and my urologist has suggested a sacral neuromodulation trial after i have completed some urodynamic tests. She said that she cannot think of anything else it might be, but that it is uncommon for people with FS to be able to pass urine at all, even if it is only small amounts of incontinence. Is it possible that i have FS? My gynae issue is recurrent endometriosis if this is any help. Thank you.

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    admin reply:

    Some women can pass some urine and an alternating history of retention and incontinence (?urge incontinence) but with obstructed voiding is not uncommon. Get the UPP measured if possible. Neuromodulation might well work – hope so.

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    June 9th, 2012 at 3:41 am
  5. Mrs Laura Owen

    Hi, I would be very grateful if you could tell me if the following sounds like it could possibly be FS?…………..
    A 25 year old female with a history of 2 x very early onset labour that no explanation has ever been given for. Aprrox 2 and a 1/2 years after the last pregnancy she experiances difficulty peeing, no pain just having to push very hard. Over the next 2 days she developed severe abdo pain and so was taken into hospital. 3 days later a large “lemon sized” cyst was removed from her right ovary. Upon waking from surgery she has been unable to pass urine at all, she gets the sensation of an extremely full bladder and all the pain and discomfort that accompanies this but is unable to pass anything at all and so she had to be catheterised. All scans, xrays, bloods and urine tests have come back as clear and the doctors appear to be baffled as to the cause. She has now been in this position for 7 days (since date of operation) and no one seems to have any idea what could be causing it. Many thanks for your time.

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    admin reply:

    This sounds very much like FS. Is it possible to get her urethral pressure profile measured?

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    June 13th, 2012 at 1:18 pm
  6. sue

    My daughter who is 20 years old over the last year has been experiencing difficulty going for a pee. The 1st time it happened Jan 2011 i took her to A&E as she had gone into acute urinary retention. She was cateterised,drained and then sent home. The very next day the same thing happened and they left the catheter in for a few days before removing it. She was then able to go but now experiences difficulty on starting to pee has a poor flow thinks she has finished going then has to try again 5 mins later because she realises she hasnt finished. In April this year she again went into acute retention and was catheterised again. It was left in a couple of days and this time she was referred to urology who then arranged for her to have urodynamic tests. Last week while we were on holiday the same thing happened again and she was catheterised until today when she was due her urodynamic testing. We arrived at the hospital this morning and the test was done (ish) (she couldnt pee out the water they inserted in her bladder. The nurse doing the test has sent her home with a catheter and sending a nurse to our home to show her how to self catheterise. On the graph for the urodynamic test the nurse showed us that when she tried to pee there was movement in the graph but that it did not go up as it should when passing water. Later this month she is going in to have her bladder muscles checked under a general and our GP wants to get her a referral for an MRI scan. Obviously i am very worried about all this as she is a young girl and started looking up possible causes for this. If all the tests come back inconclusive is it possible that what she is suffering is FS?

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    admin reply:

    This could FS and could be diagnosed by a urethral pressure profile measurement. Did she have any activity during the urodynamic filling side of the test?

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    admin reply:

    This sounds very like the natural history for FS. It is important that other causes are eliminated, so very good that she is being investigated for other conditions. The urodynamic findings you describe are quite typical in that there was no rise in detrusor pressure ie the bladder muscle did not contract. Can the urethral pressure profile (UPP) also be measured ? because an abnormally high UPP would be a positive feature rather than a series of negative findings.

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    sue reply:

    Thanks for your comments i have only recently noticed my question had been answered. I cannot recall any mention of her UPP being mentioned at the time of the testing only what was said about the poor muscle activity and basically being told apart from ISC there is not a lot urology can do to help her and for us to wait until she has seen the neurologist. Due to a bit of a mess up with referals her neurology appointment is not until december so long wait. In the meantime she is keeping a voiding diary and has another uro appointment in November. She also had a cystoscopy and result was she has an atonic bladder. She is currently coping quite well with the ISC but has said she hasnt felt any discomfort in withdrawing the catheter which is something that has been mentioned on your website as being common with FS. Whatever the outcome it is comforting to see there is somewhere people can ask questions about what seems to be a bit of a strange conditions in young women.I am keeping my fingers crossed that it turns out to be nothing too serious. Thanks for your time

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    July 16th, 2012 at 5:30 pm
  7. Cheryl

    I’m a 21 year old woman and since last year, (2011), I have been suffering with urinary retention. I just woke up one morning and couldn’t urinate at all. I never had any history of urine problems or anything. I had to go to hospital when the pain was unbearable. Basically, I could feel my bladder filling up but had no need to go at all. I tried pushing it out but nothing happened, it felt like something was there stopping it. I stayed in hospital for a few days and underwent some tests and they all came back clear, they found nothing. I was catheterised for a while and was fine when I had it taken out until a couple of months later I went into retention again and nothing was found. I had a urethral stretch October last year but went back into retention January this year. I have been catheterised on and off for the last year. I find that after being catheterised for over 2 weeks, I am normal again for a couple of months but then go back into retention again. The urologist cannot find the problem. I am due for another urethral stretch soon as I am catheterised again. What do you reckon this could be? It is such an inconvenience having a catheter in all the time.

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    admin reply:

    You should learn Clean Intermittent Self Catheterisation which would limit the times you are admitted to hospital. The test your consultant should perform are Urodynamics and a Uretheral Pressure Profile measurements..

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    admin reply:

    The fact that your doctors thought a urethral stretch might help suggests that they think your sphincter is overactive which is of course the underlying problem of FS. Your history does sound good (or bad from your point of view!) for the condition.

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    August 16th, 2012 at 6:06 pm
  8. Rose

    Hello, I am a 28 year old woman who delivered a healthy boy 4 months ago. I was in labour for 45 hours (no idea why they let me labour that long) and was stuck at 9cm for 9 hours and pushed for 2.5 hours. My son came out with injured muscles from being stuck for so long. I couldn’t pee after delivery and after discharge from the hospital I was incontinent of stool and returned to the hospital with urosepsis 3 days after delivery. At readmission I had over 2 L in my bladder. Since then I have been doing CIC every 6 hours and only recently began getting the urge to pee occasionally. My urodynamic testing is normal and I still have not peed on my own unless I strain after a bowel movement…not sure why this only works with a bowel movement. I keep getting passed on from different urologists that keep placating me saying ‘it will get better’ I also have trouble with constipation (which I had never had before). Could this be Fowler’s?

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    admin reply:

    It sounds as if you had alot of pelvic floor trauma and it would be sensible to see how things improved in general but certainly if you are left with urinary retention when everything else has recovered I would be a bit suspicious that this was FS. You see if the urethral sphincter had been damaged during the delivery you would have incontinence rather than retention. Did you have a lot of pain killers? Opiates and tramadol in particular seem to precipitate retention in girls who are susceptible.In the original research we found that it was the women who went into retention following child birth that were those who were most likely to recover spontaneously, so lets hope………….

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    Rose reply:

    Hello Again!
    I had posted back in August and wanted to update and ask for some advice. I have started to void small amounts 100-150 cc every 6 hours before I catheterize and I have residuals between 50 and 300. In those who recovered after childbirth…is there any experience with the duration of time that they take to recover? Some days I feel like I may be able to wean and then I have a high residual without any rhyme or reason.
    As far as pain killers go, Yes, I had a lot of pain killers…(otherwise I don’t think I would have survived a two day labour still shocked that that happened) three boluses of Fentanyl during my labour and had a failed epidural followed by a spinal and a second epidural.
    I am assuming my pelvic floor has healed…not sure how I would tell….
    Again I am not sure if you know but if you can give me any approximation as to how long those who recovered spontaneously took, I would appreciate it! I am no 6 months post partum.

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    admin reply:

    Rose, there is no good data on this I’m afraid but it is very encouraging that you are now voiding and often having low residuals (less than 100 mls). I would have thought it would be weeks rather than months before you were right, particularly if you have stopped opiate pain killers.

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    August 23rd, 2012 at 1:44 am
  9. Kirsty

    Hi I’m a 25 year old woman who has had urinary problems for the last two years. I have always suffering with recurrent water and kidney infections as a child but only recently has this became more problematic. After investigations it became clear I wasn’t fully emptying my bladder and had residual volumes over 350mls each time. Most urodynamic tests came back normal and and my urolgist was unsure what to do next, I had a urethral dilation to no avail and then at Xmas I went into acute retention, when bladder was emptied at A&E it was over 1.4l but had no urgency to go! Had a folly catheter inserted for 4 days and was still not able to pass urine on my own for 6 weeks after, CSIC helped daily (6/7 times) but really got me down as it hurt so much when removing! I am able to pass small amounts of urine throughout the day now but have a broken stream. My Urologist is performing a UPP in the next few weeks along with cystometry. Could this be Fowlers?

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    admin reply:

    Hello Kirsty

    With the history you’ve given it does sound like Fowlers syndrome. Have you had the UPP and if so what are the results

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    Kirsty reply:

    My UPP and cystometry is scheduled for 25/10.

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    Kirsty reply:

    Having had cystometry and UPP yesterday, my consultant has referred me to Queens Square hospital for further investigation. I am unsure of the results, I was just told upp was high? not sure what this means though.

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    August 30th, 2012 at 8:36 pm
  10. Sarah

    Hi I’m 28 and currantly 30 weeks pregnant i have been diagnosed with fowlers syndrome in november 2009 and after 2 years using isc and having a full term cath my consultant said he would try a neuro stimulator and in november 2011 i had it fitted i was amazed that after a week i started to wee all the infections stop and i finally felt i could live my life to the full again and after being so poorly with infections and pain this really was brilliant for me, then in march this year i found out i was pregnant and was advised to switch off the neuro stimulator, and use isc i was really disapointed and as i thought within weeks i was in hospital with infection in my kidney and bladder this has continued up until know the pain is so bad i have passed out, i’m on long term antibiotics and i have a high risk pregnancy, i have had a long term cath in at time when i cant get my isc in but the pain is just to much and is really geting me down i have sean my consultat regulary and he has agreed somthing has to be done this is my 5 pregnancy and ive never got to 30 weeks before, 2 weeks ago i went into labour and i didnt realise till i went to hosp it was labour as i have alot of pain normally i have in the past been on tramadol for the pain which has help but cant have anything apart from paracetamol which does nothing, i cant have codine, they managed to stop my labour and also gave me steroids for baby, my consultant has reccomended i have a super pubic cath fitted i have had one before but said i had to be put to sleep which could start off my labour or have my neuro stimulator switched back on and they are not sure if that mite make me go into labour, i want to do the best for my baby and want to go full term i’m really confused and not sure if i cant put up with this pain any longer its stopping me enjoying been pregnant and enjoying every day life i find i cant go out as im in so much pain, do you think having my neuro stimulator switched on would harm my baby or bring on labour i really dont want another operation as i have had many to try and fix my bladder please help i’m so down about this and would like so sort of advice, thank you

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    admin reply:

    Medtronic the company who develops and are the manufactures of this medical device and technology advise that the effects of InterStim therapy on an unborn child are unknown and therefore if you become pregnant or are planning to become pregnant the device will need to be switched off for the duration of your pregnancy.

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    September 2nd, 2012 at 5:44 pm
  11. Claire

    I am a 40 year old woman who has had 20 years of issues with both kidney and badder issues. In 1999 I had a duplex kidney removed due to chronic infection. However, scans had also revealed that my bladder was not being fully emptied so I was taught how to self catherterise. I found this process extremely painful and due to this I stopped doing it. For many years now I have not felt any urgency to pass water, even though I was able to pass some myself I could go all day quite happily without feeling the need to go, just a little uncomfortable sometimes when I felt that my bladder was full. Last year my bladder stopped working completely and I was admitted to hospital with acute retention. Since then I have started ISC again and am back under a Urologist. I came across this condition and think this may be a possible diagnosis for me. At the same time I was having bladder issues in my 20′s I was told I had PCOS. My current Urologist does not seem to feel the need for me to be diagnosed with a particular condition, the emphasis being placed on managing my symptoms. I on the other hand would like a diagnosis hence me finding this website. I was referred for Urodynamic testing but this was then cancelled as they thought it would not tell them much more about my bladder that they didn’t already know, plus I was told the tests are rather unpleasant. On my last visit, I was advised that my problems could be a result of a neurological condition, yet no referrals or MRI’s have been offered. Am at a bit of a loss of where to go from here with this but am wondering if I could have Fowler’s Syndrome?

    October 23rd, 2012 at 8:33 pm
  12. Abbie

    I am 17 years old and I have had a few test of suspecting FS, i have never experienced any urinary problems before but i had my appendix out this year in January, after this had happened i noticed i wasn’t going a wee as much as i thought i should i thought this was due because i couldn’t strain because of the scaring on my stomach was extremely swore as i got better i still wasn’t passing urine as much as what i was drinking, i went to my doctor near April, where he tried to self cathertrise me, we found the tube was big and i was in so much pain with him trying to do this. He sent me home with tablets to try and relax me and see if i could urinate if i couldn’t to go to the hospital because i hadn’t actually urinated in 10 days, i went to the hospital where normally it takes ages to be seen in A and E where i was seen straight away, i was taken into a room and they tried to put a catheitire in, at first they didn’t put it in right and after half an hour of being in discomfort i was seen again and put in the right hole, i was put on laughing gas as it was so painful for them to put it in, i was sent home with a catheitire for three days, i then had to come back on the second day as the catheitire had been blocked and they took it out. After i was sent to urodynimics under a district nurse for a few months who kept telling me i wasnt drinking enough, every week for two months i would be told i wasnt drinking enough or they don’t know whats wrong with me, after two months of being in pain with my back and still not being able to wee, my mum asked to be seen privately in a hospital where he said i should of been seen quicker and sent me straight for an MRI, my MRI came up all ok which was great news as i was also told i may have MS. i was then being treated in uryodynamics and have been given a few ultra-scans to check all my ovaries are ok and everything is fine. i have one last test to go to see if i have FS but i have had the test of filling my bladder up and still full retention. My consultants are 95% sure i am suffering with folwers. i have been told about the ‘bladder pace maker’ and may be having this but i have the sounding of the bladder on the 7th of november. this is my story of Folwers and Folwers is not well known and ever medical person who asks about me if they dont work in urology they dont know anything about it. All my friends think its amazing i can’t urinate as i can never break the seal when i go out on a night out, also i can chose when i want to go to the toilet. Folwers syndrome isn’t all bad and its not the best thing to have but its something you can live with and isn’t all bad

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    admin reply:

    Hello Abbi thanks for your e mail.

    It seems that you require further investigation and from what I understand from your e mail and that you maybe having an urtrasound scan of the bladder. This will show if you are emptying you bladder. If you are not emptying or you are not able to pass urine then in the first instance you should learn to self catherise. You should see what is decided after you test. Thank you

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    October 25th, 2012 at 7:23 pm
  13. chanel j12

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    November 2nd, 2012 at 2:44 am
  14. Courtney

    I am a 30 year old woman who is 4.5 months post-partum. I developed complete urinary retention following a 39 hour labour with 3 hours of pushing, and had an epidural for the labour. The urinary retention was initially complete, but within a day I could void about 200ml. However, I still had large residual volumes (700-800ml) in those first days. I am now able to void anywhere between 200-400ml, depending how much I hold it in and if it is a “good” or “bad” peeing day. My residuals are usually lower (100-150ml) but can be up to 400ml. I do have the urge to pee, but it is different than it used to be before the labour. When I pee, it feels like I am trying to push urine out through a small hole sometimes and other times it feels almost normal. I haven’t seen any significant improvement since about 6-8 weeks post-partum.
    I had urodynamic studies showing my bladder is contracting but the urine flow rate is low. Then I had a cystoscopy showing no obstruction, and that the internal urethral sphincter seems to relax when I want to void. I also had a normal MRI of the spine. I have videourodynamic tests next week.
    Could this be Fowler’s syndrome? If so, I saw that after childbirth it might resolve, but over what period of time does that usually happen? (or where can I find that information?) If I have incomplete urinary retention, does that mean I am still a candidate for sacral neuromodulation if it comes to that?
    Thank you.

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    admin reply:

    You have been thoroughly investigated and no other explanation for your retention found so that it is very likely that you do have FS, particularly with the change in sensation of needing to void which you have noticed. Also the variable nature of your symptoms suggests a functional rather than structural problem.
    Unfortunately quite how long it will take for you to return to voiding fully, is impossible to say for certain – the data just does not exist but it does sound as if you are heading in the right direction. Its months rather than years probably and you would not want to consider sacral neuromodulation until you have stopped improving.

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    December 14th, 2012 at 7:44 pm
  15. Courtney

    Thanks for the reply. I’m encouraged to hear you say it is still possible for me to improve. In terms of the return to spontaneous voiding after childbirth- are there any articles documenting this or is it just a general impression from the clinic? I’m a scientist and as such, looking for numbers, percentages, timelines and anything that has been found which could improve the odds (ie. intermittent vs. indwelling catheterization, trying to void as much as possible vs. sphincter rest). I realize a lot of this information is likely unavailable, but if there are any articles that you could refer me to, I’d really appreciate it.

    December 17th, 2012 at 1:59 pm
  16. Courtney

    Also…one last question…when it is said “spontaneous recovery”….is it usually gradual or can it occur all of a sudden?

    December 17th, 2012 at 2:18 pm
  17. Courtney

    I should really think about all my questions before posting….one more question again (sorry for the multiple posts, but recovery is all I can seem to think about these days) My urogynecologist told me 6 months to 1 year for recovery of function, but I presume she is going under the impression that this is nerve damage. Have there been any cases of women with Fowler’s syndrome to have recovered this late from the event (I know we don’t have an exact timeline, but there must be some knowledge of whether recovery was prompt or delayed)? If not, I’d rather know than keep hoping, but if so it will give me something to aim for. Thanks again for having this blog, and I promise not to post another question today!

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    admin reply:

    I don’t’ know much about the time course of recovery – patients didn’t come to see me when they were better! But I certainly remember referrals of girls who had had retention following childbirth and were sent appointments and who did not turn up (presumably because they were better) and a couple who had retention, had a baby and then recovered voiding.
    Spontaneous does not imply “sudden” I’m afraid. I am inclined to agree with what your urogynaecologist has said.

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    December 17th, 2012 at 2:32 pm
  18. holly

    Hi, I am 27 years old and would like to know if my symptons could be fs; I have suffered from water infections in the past, however for the last year have had several episodes of not being able to empty my bladder. In some cases i have not been able to pass any urine and other times can only pass a weak flow of urine. My stomach often bloats and is very uncomfortable, i also suffer from a sharp pain in my left side. I am back and forth to the doctors and have had an ultasound but no one had any answers for me. I have only just stumbled across fs on this website and wonder whether this could be what i am suffering from? Any advice or comments please? many thanks.

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    admin reply:

    The best thing would be to get the amount you are leaving behind in your bladder estimated by ultrasound. If this is high (>250 mls) it would be reasonable to be ask to be referred to a urologist.

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    January 4th, 2013 at 11:27 pm
  19. Annabel

    I am 27 have a history of severe endometriosis and Interstital Cystitis. My symptoms are mainly pain and frequency with retention if i dont empty my bladder as soon as i feel the need. I have just had urodynamic studies, which showed a possiblity of Fowlers, apparently i had a high UPP. I have been referred for a EMG. The consultant seemed to suggest that if i have Fowlers then i couldnt possibly have Interstitial Cystitis as well. I feel i have symptoms of both, please could you offer your thoughts on this.
    Many Thanks.

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    admin reply:

    Pain is not part of FS.
    Are you taking pain killers? Some of them (tramadol particularly) seem to put girls who have a tendency that way into retention.

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    January 11th, 2013 at 11:56 am
  20. N D

    Please can you provide some advice regarding my 14 yr old daughter. Last September she came to me stating she was only able to pass dribbles of urine. This lasted for 3 day and I took her to A&E. They tested the dribble that she produced but said there was no infection. They also took blood samples and they standard tests all came back normal. She was physically examined for weakness but nothing found. In the end she was sent home but by Sunday I had to bring her back as she was in so much pain from the pressure in her stomach area. This time she was catheterized and sent home. Following this she was seen by a urology nurse as an outpatient and was taught to self catheterise. Since then she has had 2 occasions where she has been unable to insert the catheter an has been admitted to hospital twice. She has had an MRI scan on her spine and brain and ultrasounds on her kidneys and bladder and all appears to be normal. Aside from total urinary retention she is and was a healthy teenage girl. The hospital do not seem to know what is wrong and just say this may pass or it may be permanent. Could she have fowlers syndrome? If so, how do I go about getting a diagnosis as we live in Belfast. She is due to have a urodynamics study completed in march and she has been referred to a psychologist as they obviously believe it is psychological. Any advice would be greatly appreciated.

    Open quote
    admin reply:

    What was the volume when your daughter was catheterized? If more than 1.5 Ls this history would do well for FS but it would be best if she had also had a normal cystoscopy.
    You could take some print outs from this website to your urologist or even neurologist.

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    N D reply:

    Thanks for your prompt reply.
    The first time she was catheterized it amounted to roughly 1 litre within the space of an hour I think. The most recent time the nurse recorded in her notes that 850mls was present 2 hours after she was catheterized although my daughter said at the time that it was over 1L. If she were to be tested for FS, would she have to be referred to your hospital in England or can it be done in N.Ireland? Can she be referred to your department? How does the process work?

    Open quote
    admin reply:

    You could ask her doctors to perform these test in Belfast. As mentioned in the website and blog a Uretheral Pressure Profile (upp) & Sphincter Volume (SV) may help with diagnosis but before these test she should have a cystoscopy to rule out any abnormalities in her bladder.

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    January 19th, 2013 at 1:07 am
  21. Kathleen Birck

    Hi, I am a 35 year old female, who was diagnosed with Fowler’s Syndrome in April of this past year and had an Interstim placed May 24, 2012. My symptom of urinary retention developed shortly after an appendectomy in June, 2011 and I self-catheterized for about 9 months before it was determined I was not improving and could have the implant done.

    My question concerns the Interstim and if any of you have experience with it. For the most part, I have had excellent success with it. However, I have developed some additional, likely unrelated, symptoms, beginning about 3 months after placement. These include GI problems, including abdominal pain, change in stools, and weight loss. My GI doc thought the Interstim may have something to do with the bowel changes, though Medtronics and urology do not. The rate of bowel complications is 3%, so my gut says I have a whole new problem but I wanted to see if any of you have thoughts on this. Thank you.

    Open quote
    admin reply:

    Hi KATHLEEN
    From experience I would agree with your Urologist and Medtronic when they advised that your GI problems and abdominal pain, change in stools, and weight loss are not related to the interstim and you really need to ask your GP to look into it further.

    Close quote
    January 19th, 2013 at 4:17 pm
  22. Philippa Mountjoy

    My 12 year old daughter was diagnosed with dysfunctional voiding, recurrent ecoli urine infections and fowlers syndrome in feb 2010, when she had video urodynamics imaging. She has spent many years from the age of 5 being treated and assessed by the urodynamics department at Birmingham Childrens hospital, as she has never been dry, day or night. They tried hourly and double voiding till she was 9, then tried a supa pubic cathetor, which was a disaster and caused more infections than ever before. The day after her video urodynamics imaging, she had surgery to form a mitrofanoff. they decided upon the mitrofanoff as she has residual urine left in her bladder after voiding, she has no sensation whatsoever and when they filled her bladder they got to 650 mls and she made no reaction and they could have kept on filling the bladder. When things go wrong and I have to attend my local hospital or my GP, I have to educate these doctors and nurses as to what a mitrofanoff is and what fowlers syndrome is. I would find it interesting to know if there is any link between fowlers and polyhydramnios with no medical cause. I had polyhydramnios when pregnant with my daughter and she was born at 32 weeks gestation. I am also wondering if there are any support groups for children with fowlers syndrome and their carers. Also is it rare for children to be diagnosed with Fowlers, as i cannot find any information on the internet for children with Fowlers.

    Open quote
    admin reply:

    I suspect this is not FS. As explained on the website, FS is not the same as just as incomplete bladder emptying – there have to be positive features to make the diagnosis. It sounds as if your daughter may have got some sort of congenital bladder disorder (you are right FS was not seen in children) which includes incomplete bladder emptying. There are alot of bladder disorders which are not understood and do not have names – I think she may have got one of those unfortunately. Medical problems are much more difficult if there’s not a diagnosis and a named condition.

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    January 28th, 2013 at 1:11 pm
  23. Discover More

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    February 25th, 2013 at 12:54 pm
  24. Your name...kirsty

    I am 20 years of age now but I have been having problems with my bladder for the past 6 years but only 7 months ago I was diagnosed with fowlers syndrome and is waiting for test for an operation in London but there is nothing out there that actually helps you understand why you have this fowlers syndrome no doctor in northern Ireland is able to tell me whats going to happen next I just hear the same thing over and over again I was up with my nurse 6 months ago and only had an appointment the other day to see her but she cancelled it when she realised I had been in hospital 38 times in the last 6 months honestly don’t know what to do with it all ive really had enough

    March 3rd, 2013 at 4:32 pm
  25. B.Brady

    am a 23 yo. Back in early September last year 2011 i woke up one morning with vomiting and pain in right lower ab-do. Doctor’s straight away said it was appendix and said i will have to get them taken out. That night they were wheeling me down for a x-ray/ultrasound just before the operation, half way down they decided not too worry about the test’s etc get me straight to theatre so that’s where i went. In the operation they discovered it wasn’t my appendix it was burst cyst’s on my ovaries so they cleaned them up and also decided too take my appendix out as well while they were in there, Instead of going in from right side where appendix is they have gone in from my left side. The following morning i woke up and was unable to urinate but could feel the urge but couldn’t pass anything. Couple of day’s later they sent me home with Nurse home visits and a IDC, i was in a really bad way. The following morning the nurse came and sent me back into hospital once again got admitted and the my bowel decided not too work and on all the laxatives under the sun. . Couple of months after bladder decided too work again but about 4 months ago it decided too stop again completely. Ever since i have been having a IDC and self catheterising. Cut long story short. i have been in and out hospital since september last year with bowel/bladder problem’s. I have been on the common laxative’s in which my body is now immune too now, currently having too have Enema’s and bowel prep too get me moving or else i wouldn’t go for week’s. It’s just getting worse. I was a completely normal 22 yo before this operation and now i am the complete opposite. I have been forever going to Gastro Doc’s at hospital who keep’s saying it’s pelvic floor and that i need to go and see a physio at $100 a visit. I have also had a Colon Transit study in which showed my lower left bowel ( where they took appendix out) is not working. I have had a colonoscopy/cystoscopy and they have come back normal yet i still can’t pee or use bowel. I have a euro dynamic study next week and also this Hospital has refereed me too a bigger hospital in which specialise in this area so will be interesting too here what they have too say. I had a Gastro appointment yesterday with the hospital that performed the operation and this time they stated it “could now be” Fowler’s Syndrome. What do you e think??? I personally have thought all the way it is Nerve damage…… This has interrupted my social life dramatically and also work as i have had too take alot of time off even too this day 2 years later. I am located in Australia and very little people doctors ect no anything about this syndrome. Basically what they have to me is if the physio we are giving you now doesn’t work i will be stuck like this for the rest of my life self catheterising and taking all the laxatives under the sun. I have been doing that now for a year. Is it possible to give the opp a go???Appreciate you taking the time too read this , Hope too hear some thought’s. Thank’s

    Open quote
    admin reply:

    If your urethral pressure profile was high it would be in favour of FS – if low or normal then damage to the innervation of the bladder is possible although its difficult to see how that could have happened.
    Are you taking painkillers? See website!

    Close quote
    March 4th, 2013 at 9:54 am
  26. Jenny

    I’ve had an official diagnosis of IC and folwers syndrome and after several appointments to convince me I had the trial for SNS done last February (2012). I thought that perhaps a patients perspective who had been through it and come out the other side might help anybody who is trying to decide about whether to have SNS done and how well it can work.

    The trial was so successful that I had the full unit done within 6 weeks of the trial. Before the SNS i was voiding 40 times a day and at least 4-5 times at night (urge Incontinence and then total retention but couldn’t catherise as we couldn’t get a catheter in me because of the spasms, so I had to be sedated to fit a catheter until my bladder came back to life)

    After the SNS I void about 6 times (sometimes less) and no longer void at night. I no longer go into retention either and also am able to be catherised and am able to have instil tratment for the IC – something was impossible for the SNS was fitted.

    SNS has changed my life.

    March 4th, 2013 at 11:51 pm
  27. Nici

    Thank you for this website. I have already sent you an email a few days ago. It’s a relief to know that there are others with FS. It’s good not to be alone. Thanks

    March 8th, 2013 at 1:07 pm
  28. Sara

    Hi there.
    I am a Urodynamics technician and have unfortunately found myself on the receiving end of Urological testing and treatment.
    I am having SNS for ?Fowlers syndrome and also detrusor overactivity with leakage.
    My inability to void is an intermittent problem. Sometimes I manage to pee but the flow is slow or intermittent and other times in the same day I can sit on the loo and despite my bladder contracting to the point of it being painful I am unable to pass a drop forcing me to self catheterise.
    My resting UPP measurements were very high at 130cmH2O and very twitchy with severe spikes of pressure at maximum closure pressure. Is this a normal observation made for patients with Fowlers syndrome? Not many of our Consultants request or use UPP measurements.

    I seem to be seeing an increasing number of female patients with very high and twitching urethral pressures which coincide with symptoms of urgency, frequency, dampness of underwear and sensations of urethral irritation or “cystitis sensations”
    Are these symtoms linked to Fowlers syndrome?
    Thanks

    Open quote
    admin reply:

    The abnormal sphincter activity can cause either urinary retention or obstructed voiding, or sometimes a combination of both. That sounds a bit like you.
    UPP went out of fashion when it was shown that they were not helpful in stress incontinence but to show abnormally high pressures is a new indication and its interesting you are finding a few women withhigh pressures. You need to do some research on the range of symptoms that occur with it. There used to be a condition called the “urethral syndrome” – have a look at the descriptions of that.

    Close quote
    March 19th, 2013 at 4:35 pm
  29. Kirsty

    Hi, I posted way back in August regarding Fowlers symptoms, and I finally have an outpatient appointment in May.
    Since last post my symptoms have been getting worse with complete retention and hopsitalisation every 2 days to be drained as self catherterisation becoming impossible due to spasming sphincter! Each time over 2 litres have been drained but with no pain or urgency..my local A&E have another Fowlers sufferer and because they come in writhing in pain and have to be seen in resus they seem to not believe me and compare me to other patient wondering why I don’t complain…is Fowlers a painful condition? as the only pain I get is when bladder is really full to bursting!

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    admin reply:

    I think your history is much more convincing for FS than the other girl’s! Typically the retention is not painful or is there expected amount of urgency.
    Glad you have an appointment.

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    March 24th, 2013 at 2:21 pm
  30. Janice

    Hello. I was diagnosed with fowlers syndrome in 2006 and had the Medtronic device implanted (Model 3023). I can relate to Kirsty’s symptoms above. I had no pain other than pressure of an extremely full bladder. Lots of other symptoms though like voidinf far too frequently. What brought me to this blog is the fact that after 6.5 years, it seems my battery is dying and the device is not working correctly….At least i hope thats the problem. I live in the US and had the device implanted in Michigan. I now am in CT and need to identify a local urologist…preferrably at Yale in New Haven that is familiar with fowlers syndrome. I called the Medtronic number and the woman that answered was a good listener and attempted to help. She however could not refer me to someone that was specifically knowledgable about fowlers. Is there any chance that someone here can help? Just because you implant Medtronic devices and tell Medtronic its ok to add you to the contact list doesn’t mean you will be able to

    April 29th, 2013 at 11:00 pm
  31. Janice

    My apologies for not completing my message….my finger twitched! My last sentence was….just because a dr works with Medtronic and is a urologist doesn’t mean they know about fowlers. I tried to call my dr back in Michigan but the office is not responsive. This was the same problem back in 2006. I hope someone can help me. Please and thank you!

    Open quote
    admin reply:

    The website editors are keen to avoid this blog including names of doctors – it’s aim is to stick to the symptoms and case histories rather than provide referral recommendations – or not.
    US urologists probably prefer the term “non obstructive urinary retention” rather than FS and they can check your stimulator on that basis. The effectiveness of SNS is better sustained for FS than other un-identified causes of urinary retention.

    Close quote
    April 29th, 2013 at 11:05 pm
  32. Your name...

    Hello, my name is Lucy and im 19 years old. i was recently diagnosed with Fowlers syndrome after several spouts of acute retention. im just curious the past few months my periods have got quite painful. this is something i have never had a problem with. im just wondering if there is any link between the two or if anyone else has experienced similar problems?

    Open quote
    admin reply:

    Both may depend on hormonal levels.
    There haven’t been any other comments about similar experiences sent it to the website.

    Close quote
    May 17th, 2013 at 11:22 am
  33. Pablo

    I am a paediatric nurse who is looking after a 13 year old female with fowlers syndrome, she is currently have the most horrible pain in the kidney area, she has had ultra sound scans and a CT of her urinary tract but all is NAD, she has these spasms once to three times a day, my Dr’s colleagues are finding it increasingly difficult to control this pain, they seem to have no idea what the pain is and I would so love to offer more help. Can you advise me at all. Please.

    May 31st, 2013 at 3:21 pm
  34. Helen

    I am 51 and have been having urinary issues since my mid-40s. Nothing happened to bring it on. I have intermittent stream, difficulty getting started, weak stream, and some stress incontinence. I also suffer from coccydynia that started suddenly when I was 48. I have had x-ray, physiotherapy (laser, acupuncture, exercises), and osteopathy to address the coccyx pain but it remains. For the urinary issues, I have had a cystoscopy where it was found I did not have any narrowing of my urethra. I then had an ultrasound which revealed a large fibroid. I had a hysterectomy at age 50 and had a large (10 cm) fibroid removed, which was attached to my bladder and broad uterine ligaments. I was hopeful that the surgery would fix the problem, especially given the location of the fibroid but it has not. I then saw a urologist who did a urodynamic test and then put me on a trial of Flomax which did not help. He referred me to a neurologist and another urologist at a larger hospital. The neurologist did an examination and a spinal MRI and found nothing to explain either the tailbone pain or the urinary problems. The second urologist also did a urodynamic study. He put sensors near my urethra and rectum, which showed a great deal of activity, yet the bladder activity was minimal. He also found that my bladder is large, it got very full before I had any sensation to empty and I did not completely empty. His final verdict was ‘weak bladder’. I often go several hours between bathroom breaks. I have occasional stress incontinence; I had 3 full-term vag births in my 20s. So far, I have stubbornly refused a catheter, since I can go on my own, though it usually takes some time and patience. I have only had 3 or 4 “scares” where I thought I would not be able to go but eventually got going on my own. The odd time that I get a good stream while emptying my bladder I feel pain in the area of my bladder. I am wondering if this sounds like Fowler’s Syndrome. The description of the condition seems to match a lot more closely to my problem than that of ‘weak bladder’ but I according to your chart I am older than the typical FS sufferer. Also, I’m wondering if the tailbone pain is related, especially since the nerves associated with the bladder seem to be in that neighbourhood. Any input would be appreciated. I am supposed to see the 2nd urologist again this summer and would like to know whether I should ask for further testing to confirm or rule out FS or any other tests.

    Open quote
    admin reply:

    You are right, you are a bit older than the average FS case but that’s not completely against the diagnosis – it happens. No tramadol for coccydynia??
    Measurement of your urethral pressure would be useful – if very high (>100) that would strengthen the case for FS and make a neurological cause less likely.

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    June 22nd, 2013 at 3:57 am
  35. Dr.Dhiraj

    Hello Prof. Fowler,
    I’m a GP in India.
    Of late I’ve come across an increasing number of young women with this Condition.. your extensive research into this has widened the knowledge of this mysterious condition.
    got a few doubts to be clarified..
    1) Is this a chronic condition with continuous symptoms or relapse/remission patterns..?
    2) Does the symptom regress or persist or worsen as the person ages..?
    3) Do alpha blockers have any role in alleviating the symptoms..?
    Thanks in advance.

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    admin reply:

    alpha blockers have NO effect.

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    July 26th, 2013 at 6:36 pm
  36. Dr.Dhiraj

    Hello Prof. Fowler,
    Of late I’ve come across an increasing number of young women with this Condition.. your extensive research into this has widened the knowledge of this mysterious condition. Hats off..
    got a few doubts to be clarified..
    1) Is this a chronic condition with continuous symptoms or relapse/remission patterns..?
    2) Does the symptom regress or persist or worsen as the person ages..?
    Thanks.

    Open quote
    admin reply:

    Thanks
    1. It is a chronic condition but with improvements and exacerbations. I thought that pregnancy had quite an effect and in some instances seemed to result in “a cure” but in others precipitated retention. This was presumably due to hormonal levels, but never found out more. Definitely taking opiate based pain killers makes retention worse.
    2. Sadly I never discovered the answer to this question. If it persisted I would have expected to have seen a number of post menopausal women in retention with histories going back to their early 20-30s but didn’t. That makes me think perhaps it improved post menopause but didn’t follow diagnosed untreated cases long enough to find out if that was true.

    Close quote
    July 26th, 2013 at 6:57 pm
  37. Stacie

    Hi. Im a 19 year old that has recently been diagnosed with Fowlers. Since being in full retention for over a year, I have also had severe right lower abdominal pain. I have had the SNS implanted which has been a life-saver for the retention side, not having the permanent indwelling catheter on or ISC but has done nothing for the pain side of things. My problem is that at my local hospital when I am admitted for the severe pain, needing morphine, nothing obviously comes up on tests they run. And when I mention the fowlers they go away, look it up on google and come back and say the spasms are down to it but not the pain. I’ve spoken to others on a fowlers facebook page and some like me have the same abdominal pain. My hospital just keep telling me as the cause doesn’t come up on any test then its in my head! Due to this they will only give me minimal pain killers which is affecting my whole life and have even admitted me to a psychiatric ward as “its not a physical problem” when it is!! Its so frustrating. I had this problem and this battle with doctors when I went into full retention (before finally after months of asking them to investigate, I was sent to a specialist and straight away diagnosed with Fowlers) as it was apparently “impossible” for females to go into retention, now i’m battling them again to accept the pain! Does anyone else have the problem with pain? Is it a common factor with fowlers? And if so, how can I get my doctors to listen and take it seriously? Thank you in advance =)

    Open quote
    admin reply:

    Pain is NOT part of the original description of FS. The urinary retention is painless except when there is extreme distention.
    Could it be that some sort of pelvic pain lead to use of pain killers (tramadol particularly) and that that precipitated retention? Opiate based painkillers do seem to have that effect in those who have mild FS, as explained on the website. Its a bit complicated but that’s the bottom line.

    Close quote
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    Stacie reply:

    Thank you for your reply. Yea I only get pain in retention side when I get over 1500mls. I’ve only recently started on opiates but yes im now on tramadol but will look into that. I now live in US so hard to get answers but thank you for your reply, given me a lot to think about and ask specialists about. Suppose when I heard of others with the abdo pain I just assumed it was FS, but thank you for putting me right, fingers crossed il find some answers =)

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    July 29th, 2013 at 12:27 pm
  38. Aaron

    Good morning, firstly let me appologise for using laymen terms. I am unsure of technical terms and medical words.Please let me explain my partners story:She has been having problems for around a year with water retention. An E-Coli infection hospitalized her and that is when the retention problem was taken seriously. Her Urologist has found problems using the little camera as her Uretha is very tight. Reading case stories, alot of cases seem to start around a time of stess and hormonal changes. After the E-Coli and other life stresses this problem was noticed. Because the actual Uretha is tight, the Urologist believe it is Fowlers. Would this be likely or is he lost for answers to an uncommon situation? Would/could pelvic floor excersise affect or iritate the Uretha? I am sorry to waffle on but we don’t seem to get any asnwers amd are completely lost.Aaron and Sarah.

    Open quote
    admin reply:

    The significance of a “urethra looking tight” is uncertain but if no other pathology has been found it would seem reasonable to assume that “tightness” is due to overactivity of the sphincter muscle, which is what happens in FS. This is the muscle which normally relaxes when the bladder muscle contracts and so allows urine to be passed.
    If you read down the various comments in this blog site, many of the women with probable FS have been told it would be helpful to get their urethral pressure profile measured and the same applies to Sarah. There are several causes of urinary retention, some of which are not understood and it is important to have positive features before making the diagnosis of FS.
    If this is FS the underlying problem is an involuntary overactivity of the urethral sphincter muscle and pelvic floor exercises will probably not have much impact on the situation.

    Close quote
    July 31st, 2013 at 10:09 pm
  39. Lavonne

    I live in the United States. In 1997 when I was 33 years old, during the 3rd month of my 2nd pregnancy I went into acute urinary retention. At the emergency room they emptied over 2 ml. from my bladder. My obstetrician referred me to a Urologist who said I had a “weak” bladder. I was taught ISC and did that during the remainder of my pregnancy. During that time I did not pass any urine on my own and had several UTI’s. After my son was born, I was unable to get the catheter in. Eventually, I started peeing on my own and did not return to the urologist as I did not feel he was helping and I was just happy I could pee on my own. However, after the pregnancy I noticed that peeing was different than before – I never really had the urge to go anymore, I just went because I knew I should or I had a feeling of fullness. I never really felt like I was emptying fully, but I could always go. Often when urinating my stream felt like it was caught off abruptly like someone turned off the faucet or the stream was obstructed like someone had kinked a garden hose. Over the past couple years, my lower abdomen has been feeling more tender and distended. Two months ago, despite my intense fears of have to ISC again, I underwent Urodynamic testing. I had a PVR of 2900 ml. I was unable to urinate for almost 24 hours and ended up with a UTI. The urogynecologist told me that basically my bladder was “dead” – my urination was only overflow incontinence and that I needed to start ISC. He additionally ordered a lumbar MRI, pelvic ultrasound, and bladder and kidney ultrasound. All of which came back normal. I was told that I have a “neurogenic bladder”, but another urologist told me technically that is not true as there is no neurological cause for my problem and that more accurately I have an “idiopathic bladder”. Does this sound like it could be Fowler’s Syndrome? I did ask one urologist if they had ever heard of Fowler’s Syndrome and they said yes, but did not pursue it any further or order additional tests. I have been offered no other treatment but ISC or physical therapy in the hopes that my bladder “may” return to normal functioning. Currently, I am unable to urinate on my own at all unless I have over 1000 ml. and then it is only a small amount. I was told that InterStem therapy probably wouldn’t help me that much. In the meantime, I feel very alone and frustrated at having no explanation for what has happened to me.

    August 3rd, 2013 at 3:01 am
  40. Lavonne

    Also, wanted to mention that I do not have a history of PCOS, but my daughter does. Also, when doing ISC I have the sense of something gripping or grabbing onto the catheter upon removal. Also a feeling of like scraping on removal as the bladder or whatever clamps down on the catheter. Thanks so much for your time and any info you can share.

    Open quote
    admin reply:

    There’s nothing about your history which wouldn’t do for FS but it would be great if you could get a urethral pressure measurement – a high one would confirm the diagnosis.
    And your urologist is wrong, FS responds extremely well to Interstim. Go for that treatment if you possibly can.

    Close quote
    August 3rd, 2013 at 3:15 am
  41. Lavonne

    Thank you so much forr your reply. I will ask about getting the urethral pressure measurement at my next appointment. I appreciate your time and the great info on your site.

    August 5th, 2013 at 2:05 am
  42. Lavonne

    Sorry one last question/comment. I think my urologist felt that InterStem would not work well for me as the smooth muscle of my large capacity bladder has been so overstretched for so long that it would not be able to contract anymore under any circumstances. Is this accurate? Thanks again so much for your thoughts.

    Open quote
    admin reply:

    It was the response of the enormous bladders to InterStim which made us realize the bladder was being inhibited rather than exhausted and overstretched.
    Interstim comes in 2 stages so you can see if its going to work before having the definitive procedure.

    Close quote
    August 5th, 2013 at 4:17 pm
  43. pam fordyce

    Hi, I am a 34 year old women who today just had a positive Sphincter EMG. After 3 years of various test done due to me having uro sepsis, ongoing urine/kidney infections which has left me very ill. The urology consultant and her team at The southern general hospital in Glasgow today heard the whale sound which lifted a great weight of my shoulders and finally gave me a FS diagnosis. I have every symptom described in the website PCO, Back injury and pain killer use as described in your list. I would like to thank Prof Fowler and her team for finding Fowlers Syndrome because without it I would never have the answers I was looking for and it isn’t all in my head! I will continue to blog my progress.
    Regards Pam Fordyce, Edinburgh

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    admin reply:

    I think Prof Fowler will be very pleased indeed to read your blog entry.

    Close quote
    August 16th, 2013 at 3:11 pm
  44. Emma

    This was the first time I came across this homepage after searching for a possible reason for my voiding problems since November 2012. And it would explain everything!
    As a child I had some problems with bedwetting and as far as I remember the doctor back then said it was due to a too tight urethra and after a dilatation of my urethra I never had any problems until I was about 25 when I started to notice that I could not pass water easily and was only able to pee after pressing on my abdomen. However, in the beginning it was not too bad and I kept telling myself this was quite normal. About 2 years ago, at the age of 31 I had an infection with parvovirus B19 which caused a lot of muscle pain so bad that I got a prescription of Tramadol which I used from time to time. Additionally just before this I started to take a new pill (Qlaira). During the following 6 months I had lower urinary tract infections once a month and more and more the feeling of discomfort even after peeing, but afterwards the infections stopped, only the “weird” feeling remained – but no pain . About a year ago I saw an urologist who diagnosed me with residual urine of about 300ml of unknown origin. During the cystoscopy he did not find any problems apart from what he described as “quite muscular sphincter”. A urodynamic examination was performed in November last year where they found that the closure pressure of the sphincter was about 4 times higher than that of a normal person and after 900ml in the bladder they stopped the examination. I was able to pass about 400ml of this volume but the rest remained (which I wasn’t aware of). After this I had to learn intermittend self catheterisation which is painful about 3 out of 4 times, especially when pulling the catheter out – it feels as if the catheter is “cutting” into the upper urethra. After having pulled the catheter out a bit further this sensation stops. I was put on Pradif for some time which did not show any effects, so I stopped after 2 months taking it because it made me extremely tired. Unfortunately, since I started self catheterisation I started to have monthly infections again. With the catheterisation I regained some kind of sense how much fluid I have in the bladder and I can pass a tiny bit (about 50 to 100ml) before a catheterization, where I normally find about 300ml. However, this volume can be exceeded up to 600ml without me realizing that my bladder is quite full.
    I have stopped taking the pill completely about 2 months ago and the first 2 menstruations after this were extremely painful and lasted about 10 days each.
    Unfortunately I have not been able to receive any neurologic or other examination as the doctors say they will not be able to find anything abnormal.
    I am 34 years old and otherwise very healthy.
    Could this be FS? And what could I do to find out?

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    admin reply:

    FS is highly likely.
    You have been shown to have a high UPP already and its reasonable to rest a diagnosis of FS on that if everything else has been excluded, but if your urologist, or you, need to be convinced, a sphincter EMG would provide the complete answer.

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    August 22nd, 2013 at 2:52 pm
  45. Rachel Hinks

    I am a 42yr old wonan & I have been given a diagnosis of Fower syndrome after various scans and urodynamic tests. I now self catheterise when necessary. Sometimes once or twice a day and other times I can go for a week or two break so to speak. I had stage three endometriosis diagnosed in my 20s, although potential symptoms in my teens. Endo invaded my bladder and the cysts had to be shrunk using zolzdex hormone injections before I had a hysterectomy when I was was 28. Following the op I had a couple of years of problems with urinary retention and had to learn to sekf catheterise and was told that I had an irritable bladder and prescribed an alpha-blocker. Called ubretid I think. All seemed to settle until earlier this year. Rushed to A&E in severe retention. Pulse was 153 and upon catheterisation 1 litre came out immediately. Followed by another litre in the next hour or so. Several tests later and a letter was sent to my GP stating that the urologist thinks I have Fowlers Syndrome. That was 3 months ago & despite calling myself & my doctor making calls ai have had no follow up appointment in out patients. I find this difficult as don’t know how to manage the condition.

    Also having read all this website I am on opiates – MST & sometimes ooramorph for the abdominal pain and it also helps pain from psoriatic arthritis.

    I had never heard of Fowlers Syndrome. Is there a support group in UK. Are there particular specialists/hospitals that have someon who specialises in my condition. I love in Birmnham in The a midlands

    Sorry for rambling message. I just feel a bit bemused and overwhelmed & don’t know where to get any help or advice.

    Thank you
    Rachel Hinks

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    admin reply:

    This blog site is definitely not going to start giving advice about specific doctors in particular cities but in general terms you need to ask to be referred to a Continence Adviser Nurse and the chances are high that she/he will be able to help you and advise what you should do next.

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    August 22nd, 2013 at 11:05 pm
  46. lynsay stewart

    good eveing all my names lynsay im 28 years old and have sufered with retention since 2010, iv always had a problem with water infections from such a young age.
    I started in 2010 still able to pass urine but not emptying my bladder fully so my nurse helped me lern (isc).
    A short while later i had a nasty infection that turned into septacemia wasin hospital for a while and had a catheter in for 3 months after they took the caheter out i could not void at all my consultant has applied for me to have the neromodual sacral stimulator (sorry about my spelling) but he has been refused funding 3 times now :( i have on average 4-5 infections a month i feel like nobody wants to help me im also on atibiotics all the time

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    admin reply:

    I don’t think you can really say no one wants to help you if your consultant has applied for you to have sacral neuromodulation (SNM) three times! I suggest you start contacting people yourself – your MP perhaps? ASk your consultant who he thinks needs to be persuaded. You would definitely benefit from trying SNM and its almost certainly a financial issue and in these times of austerity when money is tight the authorities will need to be persuaded to fun an expensive treatment.

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    August 25th, 2013 at 10:17 pm
  47. lynsay stewart

    thank you for your reply i just get so frustrated nothing seem to go right for me i have an appointment coming up soon so i will ask my cosultant what way to go next i was not aware that i cold approch my MP about such thing so thank you for that.

    August 27th, 2013 at 3:42 pm
  48. elizabeth stone

    Hi my daughter is 17 and she has had urine detention for about a year this is what has been going on with her is when she would pee it burned though it was uti but was not then she had a cyst that erupted and they had to do surgury to clean up the blood in her stomach and after surgury she peed but then she quite and has been cathed and then she done bio therpy and they put her on flowmax and she was.peeing once a day then she started peeing 2-3 times a day then goes back to once a day she stoped the flomax and still the same and she has had a acident on her self not knowing she had to go and she has not had a period in 3 years

    Open quote
    admin reply:

    The important thing is that her urologist is happy that there is no structural or anatomical cause for her retention.
    Has she got polycystic ovaries? – diagnosed by ultra sound of ovaries. That’s often part of FS and may be associated with infrequent periods.
    Few urologists in US are familiar with Fowler’s syndrome so it might be helpful to point them to the website if nothing else can be found.

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    August 31st, 2013 at 11:15 pm
  49. Mike

    My daughter is 15 and is unable to void her bladder. This has been going on for over 5 months. About a year ago she started having allot if kidney stones come to find out it was her parathyroids. We had two parathyroids removed and about six months later she she cant void she bladder. The doctor says the problems are not related. We had a urodymatics test done and it showed that the muscles wouldn’t contract. MRI of the spine and brain everything there looked good. A this point she doesn’t feel the urge to pee, she is now self catechizing about 4 to 5 times a day. Could this be fs?

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    admin reply:

    It could be FS. Has she had her urethral pressure measured?

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    September 9th, 2013 at 5:39 pm
  50. My Homepage

    … [Trackback]…

    [...] Read More: fowlersyndrome.co.uk/2011/12/12/welcome-to-our-website/ [...]…

    September 13th, 2013 at 5:18 pm
  51. Kate

    My 15yr old daughter has just been diagnosed with Fowlers Syndrome, it has taken nearly two years to find this out. Her specialist has applied for funding for SNS and in the meantime they are going to try percutaneaus tibial nerve modulation??? It seems that she is the only one in NZ that they know of. It has been a long hard road in getting a diagnosis and would be great to talk to someone else that has been through what we are going through now.

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    admin reply:

    It don’t believe tibial nerve stimulation has been found to be effective in FS. Its probably something to do with the neurotransmitters released by the stimulation in the spinal cord – but no-one really knows.
    Lets hope someone sees your email address and contacts you. There must be more case in NZ but perhaps unrecognized so far.
    PS You need to post your email address – I hadn’t realized it didnt show

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    September 18th, 2013 at 10:28 pm
  52. Kirsty

    I’ve posted a few times on this blog to tell of my history and symptoms and now I finally have a diagnosis! Its such a great feeling to be told its something abnormal, because for a while I thought it was all in my mind!
    I came for an appointment last Thursday for an EMG test, which I can honestly say is not a painful procedure more a weird pressure sensation, and according to the neurophysiologist I’m a “Model Patient” We heard the helicopters and very angry whale sounds straight away. Was at total ease and we laughed throughout. I also had the pleasure of a lovely Croatian neuro surgeon watching the procedure which she enjoyed.
    I’ve been in complete retention now for a year so I’m really looking forward to the SNS stage so I can begin to live life normally again.

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    admin reply:

    Good news. Hope SNS goes well.

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    Emma Edgar reply:

    How are you getting on now – it would be good to hear rthat there is some hope?

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    KIRSTY reply:

    Emma Edgar….quick update Had both stages of SNS and whilst first stage went really well and had fantastic results, second stage hasn’t been as good! Worked till I got a kidney infection and then stopped. Had to have spc reinserted to help as getting no response at all at the min. Waiting for follow up appointment to sort things out! So there is hope for all its just a long wait to find it!

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    September 23rd, 2013 at 10:52 pm
  53. Caroline Presland

    I am 31 years old n was diagnosed with fowlers syndrome in 2006. After getting my head round the diagnosis and learning to self catheterise things settled down for a few years. I started having trouble catheterising myself and stopped all together. The last 2 years I’ve started being investigated by cardiology and endocrinology for a mixture of complex symptoms, last year I ended up having an emergency pacemaker fitted. I’ve been found to have low potassium levels which cause me symptoms and I’m taking supplements to help correct the levels. I’m in and out of hospital every few weeks and I’ve began to notice that when my potassium levels drop I tend to go into urinary retention… Could there be a link between them as I know low potassium effects muscles and nerves in the body?
    Caroline

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    admin reply:

    This is very interesting but not an observation made in other cases of FS. What is the cause of the low potassium?

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    Your name... reply:

    There hasn’t been a confirmed diagnosis and It’s still being investigated but I have high cortisol levels which they said suggests Cushing’s syndrome. I’ve had scans of adrenal and pituitary glands which are clear and I’m waiting for a scan of pancreas. I’m on 12 sando k a day and 10mg of amiloride but potassium levels still keep dropping!
    Caroline

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    October 3rd, 2013 at 2:22 pm
  54. A worried mum

    Hi,
    My 19 year old daughter has recently been diagnosed with FS. She has chronic retention, unable to void at all without ISC and no sensation whatsoever, Her recent urodynamic test showed her muscles were working normally but her sensation was abnormal. She is now on the waiting list for the temp SNS. In the meantime a MRI was requested to rule out MS. (Confirmed not MS) However it has shown a disc prolapse at L4/L5. She has just been admitted to hospital with cystitis and put on IV antibiotics. For the last month her bowel has now also stopped working with again no sensation to void, The hospital are now trying to treat this with enema’s. which at the moment are not working and she has severe pain in the lower left had side of her abdomen, which they are trying to control with tramadol and Morphine.
    Reading these blogs I haven’t seen any mention of bowel retention with FS. Is this also a possible symptom or should I be querying the diagnosis.

    KInd Regards

    Open quote
    admin reply:

    Opiate pain killers are very well known for causing bad constipation. Was she taking these before going into urinary retention? You may have seen on the website the connection between opiates and urinary retention.

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    October 15th, 2013 at 10:52 pm
  55. A worried mum

    She has taken opiate pain killers on and off over the last few years. But not on a regular basis.. she has had lower abdominal pain on and off since starting her periods at the age of 11. Had several admissions over this time. Investigated by gynae, apart from a simple cyst on her ovary and her bowel. nothing else was found. she had her appendix removed. Again the appendix was fine. Tried a month of no dairy products, No improvement. The last Diagnosis was IBS prior to urine retention and now the diagnosis is FS.
    Both her bladder and bowel have now stopped working with no feeling, sensation or urge from either. Admissions to hospital are becoming more frequent with infections and having to go on IV antibiotics to clear them.

    Open quote
    Emma Edgar reply:

    I so sympathise – my 20 year old daughter is suffering in a similar way. she had temporary constipation when she 1st went into retention – all due to opiates. I am trying to get her a referral to get a proper diagnosis, but am certain it if FS. Have yo progressed at all with your daughter? My daughter has been prescibed tramadol for pain but it sounds as if she needs an alternative and soon.

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    October 21st, 2013 at 7:42 pm
  56. Eleanor Bootles (maiden name Gunn)

    Hi there!
    Im a 33 year old lady with FS and was diagnosed with yourselves at London in 2009. I cannot tell you how grateful I was to finally get a diagnosis and to understand what was happening with my body after many years at the local hospital of being mistreated and undiagnosed with all sorts of other conditions, and even being made to feel I was imagining the symptoms and being told ‘oh, that condition, doesn’t exist!’, which was not helpful to say the least. It was finally like a light at the end of what had been a very long tunnel, when in 2009 I had a positive sphincter EMG.
    After I received my diagnosis in 2009, the team discussed a treatment that was being trial of injecting botox into the destrusor muscle. At which point having a meeting with my consultant urologist said he would liaise with the team at london and would be able to do the botox treatments. I have had two lots of the botox in Oct 2011 and Nov 2012 which although some up and downs, has worked well and lasted at least 8 months each time, but then of course, I suppose as to be expected it wears off and the muscle and condition is back to square one.
    Noww that I’m pregnant, 22 weeks, I have had no contact from the urology team, in spite of my trying everything to arrange an appointment, through G.P and maternity etc, the last lot of injections I had was in Oct 2012, and over the last 3 months the botox has warn off, leading to some awful bouts of retention with many occasions of residual amounts being as much as 1200 – 1500ml, recently have even had a mild infection, and a bout of hydroneprosis, (not sure of the spelling, but they said fluid on my kidney). In recent weeks Ive been bouncing in and out of the maternity unit as unable to catherise lately, due to positioning and of course bump getting bigger, with the maternity being the only ones offering any kind of assistance and support.

    Eleanor Bootles

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    admin reply:

    Thanks Eleanor – your comments have been edited to remove references to specific people but the description of your problems is still clear!
    Was the Botox really injected into the detrusor muscle of the sphincter muscle? Only sphincter injections could have improved retention.
    Your GP should write a referral directly to the doctor you need to be referred back to. Its a requirement nowadays for getting an appointment. Hope someone can fix that soon.

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    November 9th, 2013 at 11:44 pm
  57. chelcie

    hello my name is chelcie i am 20 years old i was dianosed with fowlers syndrom 18 months ago, since this time i have been using ISC i have been in and out of hospital with UTI’s and my bladder going into retention, i feel like ive been though hell and back with it, ive almost lost my job and i has made me very down and ive lost nearly all my self confidence, my consultant wants me to have the sacral stimulation done but me and my partner want to have a baby, i would be gratefull for some advice regarding if i should have a baby before or after the sacral stimualtionid done? thankyou

    November 28th, 2013 at 10:56 pm
  58. Shawn

    Hi, My name is Shawn and I am a woman, age 56 and 2 months ago I was diagnosed with Fowler’s syndrome. I do not fit the normal statistics of those that get Fowler’s as I am not in my 30′s, I have not had any babies lately and there has been no trauma to the area. I would like to know the possible causes for someone like me. Could it a post menopausal issue? Could it be that when I had a colonoscopy 4 years ago and was given Demerol (and I was allergic to it so it was discontinued while I was sedated)? Could it be from stress? I did have a stressful year. How long does this issue continue in women my age? Any ideas? Thanks!

    Open quote
    admin reply:

    You are right – you don’t really fit the syndrome. As mentioned several times on this blog there are probably many different causes for urinary retention and the diagnosis of FS needs positive diagnostic features like a high urethral pressure or abnormal EMG.
    Without a firm diagnosis its impossible to answer your other questions – but stress makes everything worse although I doubt it can cause retention.

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    December 2nd, 2013 at 5:58 pm
  59. kb

    Iv had the symptoms of fowlers since i had my son 28 months my doctors arent doing anything theyv done a scan the scanner said it was bad she made me go to the toilet 3 times. Doctors said its fine. I cant sleep til 2 am earliest i then wake up for my three month old an then my two year old im so tired im depresed n run down my stomachs begining to hurt from it and ny back i just dont know what to do iv been several times each time they say im getting refferd to then find out i havnt by either doctor what can i do iv asked for a cathitre they said its a vad path to start on :s??

    January 3rd, 2014 at 12:00 am
  60. Dilly Khanom

    Hi im 34yrs old and ive suffered from urinary retention for an year straight after i ad a laparoscopy.i couldnt empty my bladder from a day surgery i ended up staying 6 wks still no luck discharged myself then was rushed back in late night after going into rention n severe pain.That went on for wks mths for which I had be in n out of hospital so had Indwelling catheter for about 6/7 mths then was advised that needed to retrain my bladder so ad to isc as the urologist could not find anything wrong time after time was told it was a uti would clear after antibiotics over the mths took every different antibiotics nothing worked.Then after causing trauma isc went back to idc that after some wks/mths kept expelling.Again after mths of pain re occurrent infections found no cause.back to isc.Over the course of 2 yrs spent staying in hospital i made official complaints.i knew I was very ill something was wrong but no one could make out what or why.Did eventually after the complaint have a urodynamic test which showed that non of the muscles in my bladder had been working.Decided to insert an spc was told after that the damage may av been caused as one of the nerve ad been damaged during that op 2 yrs previous.Since ive ad the spc still havingproblems pain discomfort re occurrent infections.about n yr ago after research n reading i did mention to my urologist about fowlers syndrome he said yes it is very likely.I have since been to see different urologists n both times av been told the same but to av it diagnosed need to be seen at the London hospital n more tests.They av said there is no cure and there is nothing else they can do just a case of accepting taking regular antibiotics for the rest of my life.Whats baffled me is they couldn’t tell me anything else or given me any advise or support.im 98% sure it may be but can it be as ive never had bladder problems ever previous to that op in particular.Did suffer from endrometrisis few yrs ago but av ad a hysterectomy.pls any advise would be much appreciated as im suffering so badly to the point I honestly cant cope.And can anybody get fowlers due to any sort of damage/injury to the bladder?
    Many thanks
    Dilly

    January 5th, 2014 at 9:25 am
  61. emma

    poss fowlers..
    I shall try and keep this brief..
    I am 45 and have suffered with chronic retention since the age of 24 after a road accident. I suffered a head injury..and severe whiplash and. internal bruising of pelvis and bladder. loss of sensation to go to the loo was immediate and it wasn’t until 3 yrs later that I was admitted to hospital with acute retention, comstipation and a bladder infection. over 1000 ml was drained from my bladder. an ultra sound also showed a reasonable size cyst on one ovary. which resolved after 4 wks. I was diagnosed with retention and taught isc..however over the next 3 yrs I had problems getting the catheter in but also removing it..as it was being gripped and sometimes it would be 3 hrs before this would stop and I was able to remove the catheter. in 2002 I have a mitrofanoff done and did isc through this..it worked well for many hrs but now allot of leakage day and. night..plus weakness in hands and fingers has made isc very difficult ..I am. ow waiting super public catheter in march as revision of the mitrofanoff could be ongoing and my hand strength and co ordination are not good to continue isc..
    I have had mobility probs since the accident..neurological eye problems and weakness in left leg. I have had pain in groin and pubic bone area which is often very painful shooting pain into leg and pain and stiffness in my hips for the last two yrs. also arm weakness..cervical neck probs re disc at c4/c5
    since my early twenties I have had heavy and prolonged periods..not painful and had uterine oblation in 2005 so.no more periods yay!!
    investigations in psst have been uro dynamics (1997) and cystoscope (2012) and all fine although uro dynamics were not normal. I sometimes get intermittent numbness in the pubic area and right along to my anus..also pins and needles and tingling an MRI a year ago showed birth deformity at S1 which is arched. previously thought to be spina bifida occulta but this was queried on recent MRI.
    I have had chronic uti and bladder infections ..
    I was offered isolated nerve tests in 2002 but declined as it was quite invasive and at that time was advised could be hard to find which nerves may be causing the problems..have never had an EMG of the area done. there was a suggestion in 2012 of having neurological investigations but I was admitted to hospital for other neuro issues and as a result nothing further was done.
    I have been taking profilactic anti biotics for 10 yrs which help with uti symptoms but keep bugs in check but do. to get rid of them altogether.
    it has always been said the road accident has caused the retention..but a recent review of my history by a neurologyst suggests fowlers syndrome..so am unsure now what to think. I have an identical twin sister and she has not had any of the bladder issues I have had..despite giving birth to two children..
    I am living with an unclassified neurological condition and am. it sure if this is inclusive of the retention or a seoarate aspect but am hoping the neurologyst can help clarify things once he has reviewed me re history and last tests done last yr h while in hospital.

    January 16th, 2014 at 10:56 am
  62. BM

    Hi, I am 29 years old and in generally good health. After two years of unexplained primary infertility, my husband and I are currently undergoing our first round of IVF.

    During the tests/examinations to prepare for this procedure it has been found that I have polycystic ovaries but not polycystic ovary SYNDROME as I have regular periods and am thought to be ovulating…hence why our infertility is still generally unexplained.

    During my trans vaginal ultra sound scans to track my ovarian response to the IVF treatment, it has been found that I still have a nearly full bladder after I had already passed urine just prior to the test. I have no sensation that my bladder is full and do not have the ability to empty it any further. I have had to have CIC (performed by the medical staff rather than myself) in order proceed with the scans as they require a completely empty bladder. The initial catheterisation drained >600mls residual urine (after I had already passed urine a lot myself). The second (a few days later) was slightly less (~300-400mls) but again after I had already passed urine myself. I am not prone to UTIs, I do get a little discomfort in my lower abdomen at times (I assumed was a result of my PCO) and have had to ‘tickle’ my sacral region to evoke the start of urination before but never knowingly had a problem in at least passing SOME urine. I urinate a number of times per day, get a sensation when my bladder is very full that I need to go and pass urine to a level that keeps me comfortable.

    I have been advised by the fertility clinic to get this bladder issue investigated as they feel it may worsen during a (fingers crossed the IVF works!) pregnancy in the future. As I feel that I am asymptomatic of this bladder problem however (if I indeed have one at all) I am reluctant to waste the GPs time. I did wonder though whether this may be FS due to my PCO, age and loss of sensation and wondered whether anyone could advise their thoughts?

    Thank you so much for your time.

    January 19th, 2014 at 3:37 pm
  63. Amanda

    Hi – I’m a 27yo female, I think I have FS but I don’t know how to tell my Urologist I think is he wrong as he has suggested I have IC/PBS.
    I had an episode of acute retention follow appendix surgery, this was not quickly discovered or treated (returned from op about 3pm, catheterised abour 5am) When I was eventually bladder scanned she said I had over a litre in my bladder & was catheterised. Following removal of the cathether I managed to wee a little & was sent home without another bladder scan.
    Following this I have had a number of bladder problems – I struggle to know whether I need to urinate or not, sometimes I feel my bladder is probably full & then only a dribble comes out, I often have to return to the toilet after I have had my ‘final’ wee before bed. I have also had some pain in my bladder & sometimes burning on urinating, which I know is not a symtom of FS & I think is what has led my urologist to suggest IC/PBS.
    My cystoscopy was normal apart from squamous metasplasia of the trigone (probably due to reccurant UTI’s when younger) & my urodynamics showed retention of around 250ml but was otherwise normal.
    I had suspected FS before but trusted my urologist, who suggest I try ISC. On trying this, the catheter is ok to get in place but once in place after a little urine has come out a have a strong spasm (like when trying to stop weeing but stronger) and no more urine comes out. Then when I try to remove it it gets stuck & feels like something is grabbing hold of it & I have to try pull against this to get it out which is very painful.
    How do I tell my consultant I think I have FS? I have not yet seen him since trying the catheter & am hoping when I tell him about the spasms & getting stuck he may think of it – but I’m scared he might not & don’t know what to do! So sorry for the essay, I hope you can help, and thankyou for reading through this.
    Amanda x

    February 10th, 2014 at 5:25 pm
  64. Vicky

    Hi, am 24 and had this problem awhile when ever I feel I need to wee I get a burning urgency pain in my bladder but can’t pass the urine, I am under urology and have been for two years I self catheter as I struggle to wee and if I do the flow is slow and short, I have had two dilatation’s and a camera in my bladder but nothing was found, am so low with it as I get many Uti infections and bloated feeling all the time I would be ever so thankful if you could help me I can’t be the only one dose this sound like fs? Thank you vicky x

    March 26th, 2014 at 6:23 pm
  65. Emma Edgar

    My daughter who is 20 is suffering urine retention and has been since Jan12th. Following surapubic catherisation she was sent home from hospital. she is seeing a specilaist and has had every test under the sun. Last week she had vidio urodynamics – they said a muscle had gone to sleep . They are reating her with flomaxtra. she suffers constant pain which she takes tramadol fro – this worries me as reading your site, this may be a bad idea! She has taken the flomaxtra for 9 days – no change in that she cannot pass urine. Thanks, Emma

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    Emma Edgar reply:

    would TENS be a good form of pain relief?

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    April 10th, 2014 at 1:03 pm
  66. jo holton

    hi,
    I was diagnosed with fowlers syndrome 10 years ago and trialled with a stimulater twice unsuccessfully, the last one been 9 years ago, are there any advances with the stimulaters and is it worth getting back in touch with my urologist again or am I destined to isc for the rest of my life

    May 6th, 2014 at 7:51 pm
  67. Emma

    Do you have any experience with botox injections into the sphincter? I have found a few patients writing in other blogs about a succesful treatment for various other problems but could not find any information for treatment of Fowler’s syndrome (or anything which might have been Fowler’s).

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    admin reply:

    The pilot study showed it was effective and safe, and indeed some of those patients come back for injections regularly every 3-4 months. From a single case experience, it seems that middle age/elderly FS do not respond as well as the young patient. SNS is still the preferred pathway, however in the young patient with FS who is either on a very long waiting list for SNS, or who is looking out for alternatives to SNS, Botox is a reasonable option to consider.

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    June 19th, 2014 at 3:17 pm
  68. Emma Edgar

    Hello
    An update on my daughter – having had all the tests described, she was diagnosed with Fowlers and this weekend she underwent stage 1 of the surgery to implant the stimulator. She is very sore and recovering at home, so now we just need to keep our fingers crossed that it works for her. Once we got to speak to the experts, things did seem to move on quickly, so now we are hopeful that things can improve. Will keep you posted!

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    admin reply:

    How’s she doing?

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    Emma Edgar reply:

    Hello
    Sadly my daughter has not progressed. Following the 1st stage 1 surgery, she had to have it repeated owing to the stimulator moving. A nasty infection set in meaning this had to be removed too. She has a terrible ESBL infection that will not go away, probably because of the supra pubic catheter. She has tried ISC but is rarely successful owing to pain and swelling. Life is miserable. She lives on tramadol for pain, cannot work and feels terrible most of the time. She is now seeing a consultant to try to get rid of the e coli, before trying the SNM again. His method is to use large doses of old-fashioned antibiotics. We pray that this works for her. Its awful to see her suffer.

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    admin reply:

    I am very sorry to hear that things have not gone well. Lets hope the infection clears up and the retry SNM is a success.

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    July 1st, 2014 at 8:02 am
  69. Mona

    I were diagnosed with FS nearly two years ago and up until today it is something I truly do not believe in it. I was 23 when i were diagnosed with it and from my prospective I believe it’s an excuse to unable to find anything.

    I went into hospital for something else and after two weeks I stopped urinating gradually so I stayed even longer in hospital which had an psychological effect on me. Anyway after many tests doctor’s were unable to explain why and how. Once I were discharged I went to see a urologist who then explained that I had FS. I were then referred for a insertion of suprapubic catheter and then for a sacral neuromodulator. I have had the permanent neuromodulator for a while now but no longer as effective as it used to be because of constant uti’s, kidney infections and bladder stones.

    My advice to all those reading this. Please please please, get a second opinion and DO NOT rush into things just because your urologist suggested it. I’m 25 at the moment and have a body scarred for life from all the surgeries I’ve had and not confident when it comes to doing anything because up until today I still cant urinate (highly dependent on my suprapubic).

    My question to the nurses that manage this blog is, how can FS be treated if up until today no-one can explain the cause? Why is it that majority of the people it tends to happen to is between the age of 20-30? Could it be stress or hormones related?

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    admin reply:

    There must be positive features to make a diagnosis of FS – there are probably many causes of being unable to pass urine which have not yet been discovered. For FS the woman needs to have a high UPP and ideally, abnormal sphincter EMG.
    Female hormones are definitely a factor – alot of the original cases had polycystic ovary syndrome (the cause of that condition remains unknown) but opiates, including tramadol seem to be serious contributors.
    I agree with your general advice – don’t rush into things without a good idea about what’s happening.

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    July 2nd, 2014 at 1:14 am
  70. Rachel

    I am currently under urologist at University Hospital Birmingham. After 2 rounds of tests a 2 hospitals have been told they believe I have Fowlers Syndrome. Some years ago I had trauma to bladder caused by endometriosis which may be a factor. Been told that SNS is recommended treatment. However there is no funding for this at present. Feel so low with pain, bladder spasms & self catheterising each morning & eve to check bladder gets emptied. Not really sure what to do. Any advice please? Thank you

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    admin reply:

    If your carers think on the basis of the evidence they have that SNS is the way forward, you may have to agitate a bit yourself. Contact people (possibly even your MP!) and explain your situation. Resources in the NHS are very stretched but patients who make a noise – and that may not be you nature – are the people who get attended to I’m afraid.

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    July 17th, 2014 at 12:18 am
  71. Rachel

    I am currently under urologist at University Hospital Birmingham. After 2 rounds of tests a 2 hospitals have been told they believe I have Fowlers Syndrome. Some years ago I had trauma to bladder caused by endometriosis which may be a factor. Been told that SNS is recommended treatment. However there is no funding for this at present. Feel so low with pain, bladder spasms & self catheterising each morning & eve to check bladder gets emptied. Not really sure what to do. Any advice please? Thank you

    July 30th, 2014 at 1:43 am
  72. cath mc

    My 22 year old daughter started having recurrent UTI’s approx. 2 years ago but since having her son 10 months ago by emergency section she has had to hospitalised 3 times due to retention. The problem seems to flare up every 2-3 months with each one getting worse. She’s in hospital at the moment but the consultants don’t seem to have a clue, they keep insinuating that it’s all in her head. She starts off with what seems like a UTI and within 48hrs has to be admitted because of the severity of the pain. She’s had numerous scans which come back clear. This time round they have suggested that she could be suffering FS as she underwent a uro-dynamics test last week that showed her bladder keeps “going to sleep” and the nerves and muscles are not working. The consultants won’t give her a definite diagnosis and just keep telling her to carry on self catheterising, we don’t know where we can get any help. Having read that tramadol and oramorph can make this worse I’m now at my wits end as the hospital keeps pumping her full of these. If opiates make FS worse what are the alternatives for the chronic pain that she suffers with each flare up and where can we either rule out FS or get a diagnosis ? Please help.

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    cath mc reply:

    Can anyone please confirm that this website is still live. I’m sorry if I seem impatient but we don’t know where else to turn. There’s so little information and support available re FS from normal channels. We just need to feel we are not alone. :-(

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    admin reply:

    Sorry it took a while- admin

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    admin reply:

    Apologies that you did not get a more prompt response. The website is still alive but its guardian is getting increasingly out of touch…..
    However, it sounds as if FS is a likely diagnosis and intermittent self cath is the best interim management. If her retention persists, people, including her urologist, will presumably consider sacral neuromodulation but I imagine everyone is hoping it will clear up spontaneously in a year or so. is she emptying her bladder fully in between the episodes of retention? Does she have a high urethral pressure profile? If that is not something that is measured locally perhaps you coud ask to be referred to somewhere where this can be measured because it is important that FS is based on positive identifying features – not just an inability to void – which is a problem that can have quite alot of different causes.
    If its FS it absolutely isnt in her head and perhaps you should direct her healthcare workers to this website which also highlights the possible confounding effects of tramadol and opiates – which you yourself have correctly identified.

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    July 31st, 2014 at 8:18 pm
  73. Rachel

    I just wondered if there is a support group in Uk for those with Fowlers. I am struggling to cope with symptoms at the moment
    Many Thanks
    Rachel

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    admin reply:

    I’m going to ask someone else to reply to this – I do not know.

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    August 5th, 2014 at 4:25 pm
  74. Hazel

    Three questions:

    I have taken tramadol in the past, as well as other opiates/opioids, but never on a routine basis or for extended periods. However, I had taken prescription amphetamines for five years, and contracted a UTI very shortly after starting amphetamines. Are amphetamines likely to have similar links to Fowler’s as opioids? I do experience unusually severe side effects from amphetamines and have been continually titrating dosages down to minimal dosage for just a little positive effect.

    At this point, I suspect I do not have Fowler’s, as on the occasions where my retention became acute and required emergency intervention, the volume was significantly less than a liter–500-700 mls. It seems that this is a significant indicator that it is not Fowler’s, is that correct? Incidentally, I may have mild PCOS, and seem to have some definite hormonal problems.

    Finally, when the retention issues get bothersome–it seems to come and go over the past year or two, and only now is becoming a constant factor in daily life–I tend to experience deep, usually left-side, sometimes bilateral pelvic pain, achy pain radiating down my thigh, usually on one side, and sometimes, dull and persistent and very bothersome ache around my side and back. I actually underwent surgery to remove an ovarian cyst that was the suspected cause of the pain, to no avail. Is this sort of pain a factor in Fowler’s? I

    Thank you

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    admin reply:

    Pain is not really a feature of FS and you are correct, the volumes at which you are getting retention are a bit low for that condition.
    I do not know what effect amphetamines have on the bladder – certainly not recognized as exacerbating FS. I think your doctors ought to reconsider the diaganosis.

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    August 5th, 2014 at 5:19 pm
  75. cath mc

    Thank you so much for your reply and apologies again if I seemed impatient. My daughter is sometimes able to empty her bladder between episodes of retention but seems to become increasing unable between each 2 – 3 month flare-up so needs to self cath more frequently. We don’t know if she has a high urethral pressure because she has not been tested. We have an appointment to see her urologist on the 21st Aug and due to your advice, we at least now know to ask to be tested for this. My daughter is now out of hospital, and much better for the time being, but we know it’s only a matter of time before everything starts again. With the help of your website we at least now know what questions we need to be asking and won’t hesitate to direct her health workers to this site. I assume the chances of this just disappearing in 12 months or so are quite slim but I suppose we can live in hope.

    Thanks again

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    admin reply:

    If the recurrent UTIs 2 years were part of it, the history is probably longer. It would be unusual to resolve spontaneously, but not unknown. Lets hope ….

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    August 13th, 2014 at 7:40 pm
  76. Andrea

    I have recently been diagnosed with Fowler’s syndrome. I am 44 years of age. I self referred to University College Hospital via my GP after 3 failed urethral stretches from different hospitals. I have been reviewed by a number of Urologists however I had given up any chance of a diagnosis and thought I would just need to get on with having recurrent cystitis and urine infections.

    As a nurse I have researched this condition and have recently read a dissertation by Laura E. Santurri (2012). In her research she states: ‘high rates of co-morbidity with other similarly misunderstood conditions, such as fibromyalgia (FM), chronic fatigue syndrome (CFS), and irritable bowel syndrome (IBS; Warren et al., 2009; Warren, van de Merwe, & Nickel, 2011; Warren, Wesselman, Morozov, & Langenberg, 2011). This recognition has led researchers to two main hypotheses: (a) that the presence of other related conditions can lead to IC, or (b) that IC and conditions with which there are high rates of co-morbidity are actually, “a manifestation of a common, shared pathogenesis” (Warren, Wesselman, et al., 2011, p. 313). In other words, this clustering of syndromes may, in fact, represent one systemic
    problem in the body versus separate problems of multiple distinct organs’.

    I had chronic fatigue syndrome for 5 years – diagnosed when I was 24 years old. At this time my urinary symptoms were at their worst and I was also diagnosed with chronic pylonephritis. Prior to this diagnosis I thought it was normal to be delayed in passing urine, or pass a stream or urine, or struggle to pass anything at all if I had a very full bladder (apparently I have probably had retention since age 4 years). I am now waiting to have sacral neuromodulation in January.

    I would be interested to find out if there has been any further research connecting Fowler’s syndrome to any other conditions that are nerve related?

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    admin reply:

    This is an interesting question – although in the majority of cases urinary retention is an isolated symptom, there are a few cases where the condition exists together with “functional symptoms” taking doctors back to the whole thinking that the problems are psychological – not a direction to be followed, please.
    However the role of opiates and tramadol in particular needs to be looked at carefully.

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    August 17th, 2014 at 9:48 am
  77. clare

    Hi

    I am currently undergoing a trial for SCM – but it has taken a week to get over the anaesthetic and was advised by the nurse not to turn the stim up until this w/e to give my body time to recover. The surgeon told me to aim to get it between 5 and 6 (presumably microvolts?)it has taken me til today (three days) to get to 5 and I am having it removed tomorrow, i think there might be some improvement but not sure. Is there any advice that you can give on the stim and the level it should be at. I have been told I can try the second stage as this will give me more time to assess SCM in my normal working life – but any advice would be welcomed. I am grateful for the privilege of being able to try this treatment for my condition- which I think is atypical FS and would like to keep abreast of the research in this area- any advice?

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    admin reply:

    has it worked out OK?

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    September 9th, 2014 at 8:38 pm
  78. lucy wright

    good evening,
    i am doing an assignment for university on long term conditions, i have chosen fowlers syndrome as a close friend of mine has this condition.
    for a while now i have been researching fowlers syndrome as i need to include a justification based on UK epidemiology, i have searched the internet for a credible sources including the department of health but i can not find anything nationally or locally regarding this.
    could you please point me in the right direction?
    many thanks
    Lucy

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    admin reply:

    I fear there is nothing on the UK epidemiology. Once a group of urologists were asked how many cases they thought they had seen and using that figure plus allowances for un recognized cases it seemed as if there might be about 2000 women in the UK. But that’s not much better than a guess.

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    September 15th, 2014 at 7:12 pm
  79. Isabel

    Hi there, long story here but have just found out after 30 years that I may have FS. I became ill when I was 6 years old and continually had urine infections and given numerous antibiotics. My parents were very distressed as I was in so much pain and wetting myself with no answers as to why. Eventually after another house call from the GP he took my BP which was through the roof for someone that age. Transferred to hospital where they discovered my kidneys were failing. Gave little hope to my parents until a junior doctor saw my case and suggested self catheterisation. Slowly got better and fast forward 30 years still doing same procedure but have now been transferred to another urologist who has carried out several tests and told me I may have Fowler syndrome. Have one more test to confirm diagnosis after all this time but she has said I could have the sacral pacemaker or is considering cutting the spinchnter. But all information have read seems for men ? Is this normal for women and does this sound like Fs.
    Thanks

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    admin reply:

    A history going back to childhood and renal failure are not features of FS. There are many causes of incomplete bladder emptying and quite alot of them are not understood or even have a name so without positive features it would be difficult to diagnose FS. However sacral neuromodulation is a good management for incomplete bladder emptying and can be done in such a way that a trial can be done before the actual stimulator is implanted. Im sure that will have been explained. Cutting the “bladder neck” is done in young men who have difficulty emptying their bladders, but women don’t have the same type of bladder neck, so no, its not something done in women.

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    September 19th, 2014 at 7:30 pm
  80. clare

    hi, I ‘m not sure if it worked out I was in a lot of perineal pain (stitches from child birth) when I turned up the stim and only had a couple of days to try it. I am thinking about trying stage two- pemanent lead and temporary box- but would like it to be fitted under local rather than general so I can be sure that it is stimulating the right nerves- however my local surgeon only does general anaesthetics to fit the lead. Any adivce would be welcomed.

    September 28th, 2014 at 9:11 pm
  81. Lesley

    Hello,
    I am desperately looking for answers and wonder if you can help me?
    I have been having bladder ‘problems’ on and off for many years, but of late my symptoms have become strange and permanent. They are really interfering with my quality of life and I’m quite concerned that they might deteriorate to the point that they are untreatable.
    I have suffered similar symptoms to cystitis since childhood and in adulthood persistently following intercourse. Tests of my urine have never indicated bacteria and cystoscopies show no interstitial cystitis. A urachal cyst was found, but it was concluded that this could not be responsible for my symptoms.

    On occasion during a cystitis-like episode there has been visible blood and very severe discomfort, which can only be relieved by heat or opiates (which I used to use for period pain but have now not taken for 3/4 years). The pain is in my urethra and refers to my lower pelvic area. Physically pressing the area provides temporary relief. The pain feels like something is trapped in and blocking the urethra, and sometimes straining can alter the pain. My mother has the exact same symptoms and describes this as “feeling like the last drop of urine is stuck and causing pain, but heat can sometimes let it out”.
    Lately, I started a new relationship and intercourse sparked a 4 week period of these symptoms that could not be alleviated. After weeks of bed rest the cystitis-like pain finally subsided, but something seems to have happened to my urethra permanently. I am now experiencing very sudden onset sharp pain in the urethra. Sometimes it is momentary and sometimes it comes in waves that persist for hours. Sometimes peeing stops it and sometimes it doesn’t.

    I suspect some form of neurological or psychological problem with my urethral sphincter. During my last round of investigations (before this new sudden-onset pain), urodynamics was attempted. In the initial phase, when asked to pee down into the measurement device, I was unable to direct my urine downwards sufficiently for the test. I have always had to lean quite far forward to pee and use a lot of pressure, but I had not realised that my forward spray and need to strain were abnormal. Following this, two nurses and the consultant were unable to place the necessary tube through my urethra despite plenty of anaesthetic. All three commented that there appeared to be a severe restriction. The consultant used a harder set of tubes to widen the urethra under local (which was rather painful) and this allowed me to urinate downwards, but this effect only lasted 2 days. He suggested that they had located the problem and advised further widening under general anaesthetic. On the pre-op appointment a new consultant advised against this (temporary) procedure and suggested that they first see if the restriction was present under general anaesthesia. It was not. The consultant commented that the scope slipped straight in and there were no problems in the bladder. When I came round from the general he suggested Fowler’s syndrome, but at the follow up to discuss the procedure he said there was retention and restriction but discharged me, telling me to keep a food diary. I just cried all the way home :(
    I have asked to be referred to another hospital to start the investigations again (the last round took 2 years of waiting lists and just resulted in the above-mentioned discharge). I am now awaiting an initial consultation. I would really appreciate it if you could advise me on which tests to ask for? Would I be right in assuming that the urodynamics, pressure profile and EMG would pinpoint the problem?
    Does this sound like Fowler’s, or some other neurological disorder of the urethral sphincter? My urination patterns are worsening over time. I really have to push to pee and having to wee is because of discomfort rather than being busting. I have no problem holding on, it’s just really uncomfortable. Whenever I see a toilet I use it because to have anything in my bladder is uncomfortable – but I am starting to wonder if there IS something in my bladder all the time and I don’t know it until it is full? I have to pee a lot – so much it’s embarrassing, but when I go to the toilet only a small amount comes out. I feel like there should be more. I stop at every toilet to try to remain discomfort-free and I can’t enjoy a normal sex life. I often have to pee during the night because of discomfort. I am 30 years old and this is making me feel 80 and miserable. Please help me. I have tried and tried with the hospitals but now it’s getting really bad and I’m getting desperate. The sudden onset pain is making basic life difficult.

    Any advice or signposting you an offer me would be really appreciated.

    Lesley

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    admin reply:

    Its very important that any structural abnormality of the urethra has been excluded before going down the path of saying its a pathophysiological disorder ie the over activity of FS. You are correct in your summary of what the appropriate investigations for the condition are.
    Although FS is known as a cause of urinary retention, the same overactive sphincter abnormality can cause obstructed voiding and it sounds a bit as if that is what you have.
    I do hope where you have been referred to is able to help.

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    October 16th, 2014 at 9:54 pm
  82. Emma

    Hi,
    I am 20 years old and have been under the care of the urologists for 2 and a half years. I had a cystoscopy to which the urologists diagnosed me with intersistial cystitis. I have tried different treatment options including various antibiotics, weekly installations into my bladder for 10 months, and a urethal dilatation but none have helped. I have now proceeded to self catheterisation but this seems to be a struggle due to a narrow uretha. I get frequent bladder and kidney infections. So far this year I have been admitted into hospital 6 times due to retention. The volumes in my bladder each time have ranged from 1.2 L – 1.9L. Each time I have been admitted with retention I have had to have a urethal catheter in place for 2 weeks. The urologists are now suggesting they may have misdiagnosed me of having Intersistial cystitis and are looking into other options. I have had an MRI scan of my spine, ultrasound of the kidneys and a urodynamics test which have all come back as normal.
    Could this be possible for Fowlers Syndrome?

    Thanks for your help!

    Open quote
    admin reply:

    It could well be FS. Have you had a urethral pressure profile?
    Are you taking analgesics for bladder pain? If so what?

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    October 21st, 2014 at 9:34 pm
  83. vicky haddock

    My 21 year old daughter has been diagnosed with this condition, it started last October and had a catheter in for 9 months until she learnt how to self catheterise, She had the trial in August on a Friday and managed to urinate on the Tuesday, She had the Sacral Neuromodulation fitted on Friday, she has been feeling generally unwell since then, no appetite, going hot and cold, feeling sick but not being sick, we think the sickness if from the Codine painkillers,
    we went to the emergency Dr’s and she said everything was fine with her temp, blood pressure, Is it normal to feel like this after having this ooperation, as a mother you worry and your mind goes into overdrive,

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    admin reply:

    its a relatively minor operation and if she hasn’t got a temperature its unlikely she has an infection and I’m she will recover quickly. You are quite right to suspect painkillers could be making her feel sick.

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    vicky haddock reply:

    Thanks, it was the painkillers, she’s now on Tramadol, is it usual to be able to feel the implant
    and how long after having the implant fitted does it take for it to be switched on, on her discharge notes is says 2 weeks, but she hasn’t got an app yet xx

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    October 30th, 2014 at 10:37 am
  84. nichole

    hiya in 2008 I had an accident while at work and none of the urologists I saw at RBH would help so in June 09 I saw DR x who told me after 1 test which was repeated 3 times he was sure I had fowlers but the tests came back saying yes , no and maybe. I kept seeing him to see how things were progressing and after KUB AND Video dynamics it was confirmed this year in June 2014. we are going ahead with a uroplasty to as I was on gabapentin for pain relief but it didn’t work all it did was allow me to pass urine. I also found out that I am not allowed tramadol as it was giving me urinary infections which when I saw him in 09. I stopped taking them and changed to another type of pain killer and as of 1 January 2010 no urinary infections. I find that at least once a week my muscle locks and im in agony and nothing stops that pain. is there anything I could do to stop the muscle from locking. Dr x told me if the Uroplasty works we will be able to go from their and has said I may be a candidate for the PTS in the back. would it work in the same way as the Uroplasty would.
    im glad that we have doctors who care. im so grateful to Doctor x for all his help.
    thanks you
    nichole

    November 8th, 2014 at 9:04 pm
  85. Kelly

    Hi, I’m 31 years old and have been haves some restrictive urinary flow but only when I wake up in the middle of the night some times when my stream is very small and I am unable to push to pee more. This does not happen every nigh just here and there. Last night I woke up at night needing to urinate and sat down and couldn’t go at all. It scared me so I stood up and walked around and then sat back down and finally was able to go but with really just a trickle stream. I have never and a UTI or have had any children. I think its odd how its only when I’m half asleep in the middle of the nights that this happens. Hoping you can shed some light on this for me.

    Thank you,
    Kelly

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    admin reply:

    this is odd. Do you have a completely normal flowrate during the day? Do you take any sleeping pills?

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    November 19th, 2014 at 10:03 pm
  86. Paul Hale

    Hi,

    I wondered if you might be able to help me. My girlfriend of Three years, Sophie has been suffering with urinary problems since her early teens, she is now 27. She is unable to pass urine properly, by this I mean it takes her a long time to empty her bladder as the flow seems to be restricted. This results in retention which maybe one of the reasons that she suffers with recurring infections. She has never had a definitive diagnosis and the treatment and advice she has received so far has been somewhat disappointing. She has been advised to use Catheters to stop the infections occurring but she still has them. She seems to have been placed on antibiotics ever since I have been with her which worries me somewhat. Various test have been done, one of which showed the bladder over working, this was two years ago, the second test this year showed the bladder not working at all. The specialist has admitted he doesn’t know what to do, neither did the other specialist we went to see. She was referred to a specialist clinic in London which Sophie was very pleased to hear but sadly they have said the service has been closed to new referrals due to demand. Mean while she still has an infection that she cannot shift and is becoming more and more withdrawn and depressed. I wondered if there was any advice you could give me, anyone I could contact? We just don’t seem to be getting anywhere and i doesn’t seem like we will unless we seek help elsewhere.
    Anything you can advise would be very much appreciated.

    Regards

    Paul

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    admin reply:

    Sorry its taken so long to respond.
    I think the London service will soon be re-opening for referrals – important that the referral stresses urinary retention as that can be considered a bit of an “emergency” in terms of referrals.

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    December 12th, 2014 at 4:03 pm
  87. Jess

    Hello, I have come here clutching at straws, I’m a 26year old women. Since a teen I have always had what we called a ‘shy bladder’ I used to urinate twice a day. I got regular UTI’s. Two years ago the antibiotics didn’t seem to stop the cystitis frequency/pain I have since been a urology patient trying to get to the bottom of the issues.

    I have to push to urinate and always have a very weak “dribbly” stream. I have been being investigated for suspected IC, as my bladder never feels empty, however this is now doubted. All the antimuscarinics I was given caused increased hesitancy and retention. The two cystoscopies I have had have shown a bladder capacity if 900mls.

    After the cysto on Saturday I had been struggling to urinate, with a very weak stream when I could get it going. Yesterday I ended up in A&E in complete retention with 1300mls in my bladder. I was sent home catheterised.

    No one has bothered to check if I’m emptying my bladder properly and I am probably going to be having urodynamics in the near future.

    I’m at my wits end, does it sound like it could be fowlers? Or do I need to continue searching!

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    admin reply:

    FS needs positive features such as a high urethral profile or abnormal sphincter EMG because there are other causes of urinary retention in women – not well understood but troubles with the bladder muscle (detrusor). The fact that pushing helps you emptying is a bit against FS and more like a detrusor muscle problem. Lets hope the urodynamics shed some light on your problems.

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    December 16th, 2014 at 1:02 pm
  88. Jade

    Hello I am a 22 year old female and for the past 3 years I have been suffering with urinary problems (weak stream, supra pubic tenderness, not fully emptied, incontinence and afterwards dribble) these all started when I was younger from a very bad bladder infection where there was blood in my urine, I took the antibiotics which cleared it up but left me with these symptoms. I have had recurrent urine tests and they always come back clear and I have seen a gynae everything was fine but she diagnosed me with polycystic ovaries from an ultrasound. I have recently seen the urologist and he said I could have a narrowing in my ureatha and wants to perform a cystocopy on me to make it wider. Could I have fowlers syndrome? Or could it be a ureatha stricture? No doctor has given me self catherization. Any advise would be grateful thank you xx

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    admin reply:

    I think you could well have Fowler’s syndrome. You need a urethral pressure profile – which would be abnormally high if it was FS.

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    January 8th, 2015 at 10:05 am
  89. Kirsty

    Hi, I’ve had the SNS since June and unfortunately it hasn’t worked for me. But recently I’ve lost quite a bit of weight and it’s beginning to protrude through my skin when I bend down and especially when sitting it’s rather painful. I think I’m on the list for surgery to re-site will the surgeon be able to put it much deeper so doesn’t begin to come through my skin again? Any advice would be great!

    Many Thanks

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    admin reply:

    a re-siting would be an opportunity to reposition the stimulating leads and the box – sounds like a good idea. Well done for loosing wt.

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    January 18th, 2015 at 12:28 am
  90. val

    I am 74, a retired teacher, and after all the tests it seems almost certain that I have Fowler Syndrome. Am I unusual? Antibiotics don’t seem to help much and this is a worry. I must have had this problem for many years.

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    admin reply:

    Val,unless your retention went back 40-50 years I wouldn’t have thought FS is a likely diagnosis. Its a condition of pre-menopausal women – have you had retention that long? I fear there is a tendency for doctors to say “ah ha – woman in urinary retention – must be FS”. But there should be positive features to the diagnosis, like a high UPP or abnormal sphincter EMG. There are alot of different causes of urinary retention and many of them remain to be discovered – I think retention in older women comes into that category.

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    March 8th, 2015 at 6:24 pm
  91. val

    I am 74, a retired teacher. I was diagnosed with detrusor failure and recurrent uti’s 18 months ago. I am constantly on antibiotics which concerns me. I have had all the diagnostic tests and almost certainly have Fowler Syndrome. Am I unusual? It seems I have had this problem for many years.

    March 14th, 2015 at 1:31 pm
  92. Louise

    I am 27 yrs and I was diagnosed at queens square July last year. I have pco and I was actually given mst about six months ago for a slipped disc I wAs in cur for 2 1/2 years before being diagnosed. I have a supra pubic after Isc left me damaged and in agony. I have had the urethral pressure profile @ queens square and a uro-dynamic tests. I have lost confidence and feel isolated as at my local trust no one understand enough to support me.

    I am on the waiting list for a neuromodulator, and I hope this will give me back some of my life as I feel so emabarrsed by the tube coming out of me. I had sepsis from an infection last year which began as a urine infection. I Am in my 2nd year of my nurse training and I do have hope for the futurE knowing that there is a treatment. It was a relief to know that this tube is just temporary. I think the local urologists should have more trAining around the condition. As mine had no idea. So I felt very alone and scared until I saw the team who are trained in this syndrome. Without professors like yourself there are many women who would have no hope and I would like to thank you.

    I just hope there’s more research into this area for more advances in this area. I use isc for over a year and caused damage to my bladder
    and ureathra which led to bleeding and agony. I used to put it off until I knew I had to as I dreaded the pain. I became depressed and it seems any catheter has its drawbacks and I cannot wait until I am hopefully tube free. It’s been a long battle but the team in London really gave me hope when I was told locally there was none. I do wonder if the mst made it worse but I was in full retention a year and a half before I was given it. The opioid link is interesting. But if I look at all the causes I can tick almost every one. the supra pubic when settled is okay but I feel like I am limited in my daily life and I cannot have a relationship because of it. I just hope the neuromodulator gives me a tube free life eventually.

    Open quote
    admin reply:

    I hope the neuromodulator works well.
    Why not print out some of the pages from the website and take them in next time you see your local team. Hopefully someone will be interested.

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    March 16th, 2015 at 8:28 pm
  93. Just me

    35, F, US. Recently had a lithotripsy 3/6/15 and post procedure had acute retention. My general anesthesia did include tramadol before going in. Went to ER because I could not urinate when I got home almost 24hrs later, 1.5 L, no pain, no urgency, just pressure that was uncomfortable. Ultrasound and scans done and no obstructions. Catheterized and upon clinic follow up visit urologist took out Catheter to see if I could urinate on my own and was unsuccessful. Catheterized at doctors office and we tried again a few days later. After this time of not being able to urinate on my own, he asked his nurse to teach me to do clean intermittent self catheterization. I started last week and I am experiencing lots of pain on removal of Catheter, no issue with insertion, hydrophilic seems beneficial. My clinical history is kidney infections and kidney stones and otherwise unremarkable besides tmj and microsurgical laminectomy when I was 19. I used to only urinate twice a day. Now I am unable to urinate. I do find that sometimes I do dribble a little urine when defecating, besides that I cannot go. I have been searching for answers and stumbled on this site. I was wondering if I might have this syndrome and if I should ask my urologist?

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    admin reply:

    Sounds highly probable. Are you in US? You might need to take a print out from the website.

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    Just Me reply:

    Yes, I am in the US. Do you think my urologist has heard of this? After much reading, I don’t know what else might be going on. Of course I haven’t done the tests yet and this has just happened recently. I will take a printout. Thanks! :)

    Open quote
    admin reply:

    Sorry, its taken me a while to respond. It would be true to say quite alot of US urologist remain skeptical about FS – perhaps you have found one who isnt? I dont believe they have come up with a better suggestion!

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    March 19th, 2015 at 4:55 am
  94. Ashlynn

    I am am 18 year old female. Almost four years ago I went into acute retention and had to be catheterized. I went a couple months with everything fine, then it happened again, this time urgent care could not get a catheter in so they sent me to the emergency room and placed a Foley catheter which was left in for a couple days and I was sent to a urologist. I then had a urodynamics where when filling my bladder I get extreme discomfort in my pelvic area but my bladder does not contract or anything. I had an interstim implant which worked but had complications so I had to get it removed. As of the moment I am on self catheterizing but I find it extremely painful, I am about to cry everytime and struggle to get a catheter in. I’ve told my doctor this but he tells me I need to relax and that it’s anxiety. I’ve tried relaxing and breathing through it but it is still extremely painful and difficult. I am at my wits end. I am about to go see a new urologist as I was tired of being told it was anxiety and I never felt heard when I would tell him about my struggles and pain with cathing. Could this be fowlers? Also I’m wondering if I should ask my new urologist when I see her if we could try a suprapubic catheter. What is your view on that?

    Open quote
    admin reply:

    This does sound exactly like FS and self catheterisation is known to be difficult for girls with this problem – its because the sphincter is in a state of hypercontraction. Relaxing as much as you can, imagining you are trying to pass urine (not straining) and using alot of lubrication on the catheter are the best thing. At 18 you dont want a supra pubic catheter. Persevere and get help with the self catheterisation if you can.

    Close quote
    March 20th, 2015 at 2:37 pm
  95. AW

    Hello, my 15 yr old daughter was diagnosed with urinary retention at queens sq last year. It was a relief to know there was a physical problem which both hillingdon hospitals paediatrics and great ormond st denied she had ( it was ‘all in her head…”) etc. My daughter is due to have a sphincter emg but is due to do her gcse exams soon. Her urination is frequent and takes a long time – she strains but cannot pass urine. This is seriously impacting her life – it is very difficult to make plans and even simple outings are difficult as she is constantly looking for a loo. She gets considerable pain as well but because she is so young our GP/A & E/the consultant we saw at NHNN will not give us any pain relief. Paracetamol doesnt work and she is missing a lot of school at such a crucial time. Our consultant has a private practice but says she will not see paediatric cases so we are stuck. In desperation I have asked her secretary if she can write to our GP to get us referred to a local private hospital with a consultant who deals in paediatric urology. After more than 2 years I think my daughter has suffered enough and I want to get her seen ASAP. Any advice would be appreciated thanks

    Open quote
    admin reply:

    I think a Continence Advisor – ie a specialist nurse could probably help your daughter. Ask your GP for a referral to the one at Hillingdon Hospital. Hope she can help and that GCSEs go well.

    Close quote
    April 10th, 2015 at 10:37 pm
  96. Fay

    Hi
    My daughter is 22 years old and for the past 4 months has been going to the loo around 30 times a day. Diabetes insipidus was suspected after the gp did some blood tests, but was ruled out by the endocrine and diabetes clinic at guys.
    She had an ultrasound done last week that showed her bladder is not emptying despite her many visits to the bathroom. Chronic urinary retention is suspected, at least that’s what the technician who carried out the test said. My daughter has an appt at guys urology in 2 weeks. My daughter was also diagnosed last year with polycystic ovaries, but doesn’t have the usual symptoms, only missed periods.
    She had problems 3 years ago with pelvic floor dysnergia which was rectified when she had botox in her pelvic floor, her constipation has been resolved, although she still takes the Amitriptyline that was prescribed 4 years ago. Is there a link with the Amitriptyline and retention ?. Sorry to ramble, the constant peeing day and night has really taken its toll, so much so that she has had to quit her job, constantly tired and exhausted. Do you think that it could be fowlers syndrome ?. The technician said her bladder was very full and travelling back up into her kidneys, and needed sorting.
    I would love to know your thoughts, the condition really is debilitating , not sure how much longer she can put up with it.

    Kind regards
    Fay

    Open quote
    admin reply:

    Chronic retention is certainly the major problem with FS but at a “low pressure” ie the bladder is not contracting so urine travelling back into her kidneys is not a feature – unless the retention is very considerable. Also typically, there is no sensation of needing to PU so frequency is not a feature. Having said all that sphincter troubles do seem to cause alot of different problems, so FS is not impossible. I don’t think Amitriplyline exacerbates retentions – its Tramadol which seems to be the major culprit.

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    April 12th, 2015 at 9:01 am
  97. Pat

    Don’t know if appropriate for my son but all sounds too familiar. He had an appendicectomy four months ago and within one week could not pass water without extreme bladder cramping , this has been helped with tamsulosin which I believe relaxes bladder neck, within another week severe back pain developed which he describes as deep inside. He has been diagnosed as not emptying bladder completely and waiting on urodynamics. He is on amitriptyline for the inside pain, does this sound like fs or male equivalent.Cystoscopy was clear as was spinal mri . Any help would be really appreciated.

    April 18th, 2015 at 10:19 am
  98. Catherine P. Bernstein

    Dear Gentleperson, I have not been diagnosed with Fowler’s Syndrome, but the symptoms I’ve had for the past two years are the same as those described by FS patients on this stie. I live in the United States, and have been searching for medical resources. I have not been able to find practitioners who have investigated female urinary retention, its causes and treatments. My experience has been: the gynocologist referred me to a urologist, the urologist referred me to a urogynocologyst, who in turn referred me to a neurologist. The neurologist’s inquiry ended upon ruling out MS, with a suggestion I return to the gynocologist or urologist. ARRGHH!!. I’ve been sefl-catheterizing for the past year. But I seem to be losing functionality (retaining/needing to use catheter with greater frequency, and when able to commence voiding without catheter, must now press on abdomen/bladder in order to void). The doctors here seem satisfied that the condition does not appear life threatening. My concern is: is degenerative? And if so, is there anything I should/could be doing to mitigate or retard the process?
    Are there any medical institutions in the US that have researched FS? I am in California, but would gladly travel across the US to obtain a consultation. Thank you for your assistance. With highest regards, Catherine

    April 22nd, 2015 at 7:25 pm
  99. Jamie-Lee

    Hello I’m Jamie-lee I have been made aware this morning that defiantly have FS and I should have Sacral Neuromodulation device fitted after having my EMG and my PPU. Trouble is im more frightened now than I was when I was diagnosed with C of the cervix!! I’m so tired of being in pain! So does this work? And does it hurt ? Can I live normally afterwRds without it being a hindrance to my everyday life? I’m a little in the dark and worried (I’m a worry wart) !!

    May 5th, 2015 at 5:07 pm
  100. helena haddock

    I had a sacral nerve stimulation unit fitted last October, I have just started work and we have a diffeberatator and was wondering if the case arouse would there be any problems with me using it on anyone or would I need to take precautions xx

    May 18th, 2015 at 7:16 pm
  101. Daria Cross

    I am a 44 year-old female and 3 years ago, in the Spring of 2012, I began to suffer repeat UTI. Over the next 9 months, I saw a doctor or Urgent Care 7 times for symptoms of UTI (difficulty voiding, frequency, painful urination, hematuria) In 4 out of 7 cases there was indeed bacteria present, and I was treated with antibiotics. My last UTI turned out to be Cypro resistant, and landed me in the ER with acute painful retention in early December 2014. I was given IV antibiotics and a prescription for more antibiotics (not Cypro, but I don’t recall which). From that time onward, my symptoms did not improve and I was referred to urology for suspected Interstitial Cystitis. Over the next 6 months, I underwent diagnostic testing including Cystoscope, Urodynamics, Pelvic MRI, and Cervical and Thoracic MRI to rule out either obstructive or neurological causes for my retention (Post Void Residuals were consistently above 120 and as high as 300 cc). As no obstruction was found, and MRI showed no evidence of neurological disease (like MS or Parkinson’s) I was instructed in CIC.

    Catheterization has always been quite painful and traumatic for me, and on more than one occasion I experienced syncope when being catheterized. When attempting to self-cath at home I would inevitably experience little return (between 10 and 75cc) even though my bladder felt painfully full. Each time I attempted CIC, I would begin to have a good strong return through the catheter, but then this would abruptly (almost audibly, it seemed to me) cut off around 50cc. It seemed like there was a vacuum effect, or some other restriction of flow through the catheter.

    Meanwhile, my condition was complicated by “increased tonus ” of the pelvic floor muscles, thought to be caused by “guarding” related to repeat infection and retention. I was in a lot of pain, and although pain is not technically a feature of Fowler’s Syndrome, I believe ancillary complications such as bladder and urethral irritation due to retention and difficulty with catheterization, together with hypertonic pelvic floor muscles became debilitating indeed. I was referred for physical therapy to rehabilitate the pelvic floor. I did find the therapy to be effective in reducing my pain, and biofeedback helped me to isolate and retrain my muscles to relax somewhat.

    Unfortunately, my cyclic retention did not improve. I have been keeping a voiding diary for years (this is for piece of mind, due to the fact that CIC is largely unsuccessful, as I am able to consult the diary when I feel like my retention and accompanying are severe… Although there are many variables involved, I can track volumes in and out). I have also been tracking symptoms in relation to my menstrual cycle, and have found that days 10 and 21 (or thereabouts) are when I have the most difficulty. It seems to me that these are the days during which there is the greatest difference in the ratio of levels of progesterone to estrogen… And the severity of symptoms seems to correspond with peaks in estrogen in my cycle (right before ovulation, and again before menstruation).

    I did have Interstim implanted (stage 1 8/19/2015, and stage 2 9/17/2015). The trial was successful, and I had a period of welcome improvement for about 3-4 weeks before experiencing a horrible flare of symptoms lasting about 5 weeks in October/November of this year.

    I made the decision to stop consuming alcohol in early December (it became increasingly obvious that I was self-medicating mostly to try and control my anxiety related to my symptoms, as my nightly glass of wine became more often 2 glasses, and occasionally 3). I have experienced a marked improvement in my symptoms since giving up the alcohol. Recently, I came across a study that indicated the release of opiate peptides in response to alcohol in rats and people. And that further, in subjects with a genetic predisposition toward alcoholism (which I have in spades on both sides of my family) there is an increased release of opiate peptides, which produces a reinforcing effect for alcoholics. I wonder if alcohol consumption might also contribute to the spinal enkephalin intoxication that is now believed to be implicated in Fowler’s?

    I want to thank Dr. Fowler and the administrators of this blog for their attention to this disease, and for their commitment to providing much needed information and research on the condition!

    May 22nd, 2015 at 6:41 pm
  102. Daria Cross

    Correction: my final antibiotic-resistant UTI with accompanying acute retention was treated in ER in early December 2013, not 2014.

    May 22nd, 2015 at 6:59 pm
  103. Daria Cross

    Sorry, I should add that I have experienced post-operative urinary retention as a child (for surgery on my neck), and again after C-section.

    May 22nd, 2015 at 7:06 pm
  104. Daria Cross

    http://pubs.niaaa.nih.gov/publications/arh21-2/132.pdf

    May 28th, 2015 at 5:20 pm
  105. sue

    Many many months ago I posted on this site as my daughter was showing symptoms of Fowler’s syndrome. She was eventually referred to Queens Square and had an EMG and various other tests which confirmed Fowler’s. The staff have been very understanding which was a relief as our local hospital pretty much said the only thing to be done is ISC and discharged her without much explanation as to why this is happening. It was only after our sympathetic GP sent her to see a neurologist to check possible neuro causes for her retention that the neurologist said ‘i think this could be Fowler’s syndrome!’ And referred her on to the lovely London team who instead of hinting it was all in the head gave her a reason for it. She is now on the trial stage SNS and seeing some improvement. This is a huge relief as ISC was becoming quite painful.
    Whilst she found in the past there was no urgency feeling with the retention she does however complain of feeling spasms and pain down below but nowhere near as badly as before.
    I do feel there needs to be more awareness in other urology departments so these poor girls get help rather than being left to suffer or hints it is all in the head.
    Thanks to the lovely team in London.

    Open quote
    Pearl reply:

    Could you tell me which hospital in London, and which doctor? I think I have Fowler’s Syndrome. Well, my doctor says that’s what it is. I’m 22.

    Close quote
    July 3rd, 2015 at 1:39 pm
  106. AW

    Hi everyone

    I posted back on 10th April. My now 16 yr old daughter has now done ALL her GCSES’s and is awaiting her results. I had to get a medical note from my GP (not cheap!) to give to the school so she could be sat at the back of the exam hall and could leave if she needed to use the loo. Also, that she could have extra time when she got back from the loo. She had an EMG on Monday, saw her consultant on Tuesday and was finally diagnosed with Fowlers. Phew! after 2 years and 7 months of pain, misery, school absences, GP trips, hospital trips – Hillingdon and Great Ormond St where she was told to ‘see a psychologist because it was all in her head’. We now have to make the difficult decision of whether she should have SNS. Our consultant has advised it, saying younger people have had it done and are doing well with it. My daughter is seriously considering having it done, of course it’s her body, her choice and her quality of life. We are currently weighing up the pros and cons and reading up on it. I must admit the possible side effects are terrifying – pain, bleeding, infection, displacement. I was wondering if the alternative treatments listed here are any good – anti-cholinergic tablets, botox injections, percutaneous tibial nerve stimulation? Has anyone had any of these treatments or SNS? Any advice would be greatly appreciated. Thank you so much

    Open quote
    sue reply:

    My daughter is currently on stage one trial and doing very well after nearly 4 yrs of misery and due to have second stage this week. She was in discomfort for about a week with complete retention and constipation after the GA. The actual incision sites healed very quickly and once the device was turned on she started to actually pass urine properly within a week!!!! Yes it’s uncomfortable wearing the external device on a belt in this hot weather and she has had terrible heat rash around it but I think she feels that is a minor price to pay after years of retention. She is nervous of going back for second stage this week but so far it looks like the SNS is giving her some sort of life back. The worse bit was getting used to the strange sensations in her buttocks and tops of legs but she barely notices that now. Hope this helps and good luck to your daughter x

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    July 10th, 2015 at 1:01 pm
  107. AW

    Dear Sue

    Thank you for your reply. Can I ask how old your daughter is? Did she try any of the alternative treatments before the SNS? When she had complete retention and constipation did she use catheters? Does having stage 2 mean she doesn’t have to wear the external device on a belt? Good luck to your daughter as well and please could you let us know how she gets on? Thank you.

    July 13th, 2015 at 11:13 pm
  108. AW

    Dear Sue

    Thanks for your reply. Can I ask how old your daughter is? How is she doing after 2nd stage? And did she try any other treatments such as anti-cholinergic tablets, botox injections or percutaneous tibial nerve stimulation before going ahead with SNS? I’m glad stage 1 has worked so well for her. Sorry about all the questions but this is a really difficult decision to make. We have an appointment at Queens Sq on Tuesday

    Best wishes and thanks again

    AW

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    sue reply:

    She is now 23 but it all started about 4 years ago. She was taught to self Cath by local hospital initially, however as you may have read with Fowler’s it can become quite painful with catheters getting stuck. It wasn’t until she was referred to London she got a proper diagnosis and got the SNS . From talking to others who have had botox it isn’t always successful for Fowler’s and wears off after a few months. After having second stage all external wires are now removed and she hasn’t regretted it.

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    August 4th, 2015 at 11:37 pm
  109. MOTHER NEEDING HELP

    Might be a long shot. Where do I begin! My daughter is 17 and she has suffered from bladder retention for 4 months. She has been under every test and procedure. She has had MRI from the brain and to the pelvic. She has had a cystoscopy, ultrasounds, Urodynamics(only showed a floppy bladder), three day steroid iv treatment, chiropractic, holistic, neurologist, urologist and acupuncture. No one can figure out what is wrong with her. I am not stating that this could be the answer. But this is only thing I can see that is close to her symptoms. She is not on drugs, or any trauma, or sexual active. This is the question that keeps arising over and over again. All the test come back normal and she is still self cathing. She has no urge to go. Only back pain is she is full. This poor girl has been through so much. I was wondering if this sounds like what she has. Thank you.

    Open quote
    admin reply:

    So sorry I have been so slow at posting a response.
    Your daughter’s condition certainly sounds like FS – she needs a urethral pressure profile measurement or a sphincter EMG to be certain.

    Close quote
    August 6th, 2015 at 4:59 am
  110. kyle rose

    I am a Nurse and I always held my urine for years. I would get UTI’s throughout the years and I would treat myself with antibiotics. One day in Nov 2015 I couldn’t take the pain anymore and I couldn’t urinate. I went to a Urogynecologist in Princeton,NJ and I was told that the post residual was over 900cc. I had to start catherizing myself everyday,neurology workup,cystoscopy,ct-scan and kidney ultrasound. Even though I am a Nurse I could not bring myself to do this. I had my daughter and my friend do this. I went from Doctor to Doctor no one knew what was wrong. I also started to develop neurological symptoms.I went to a neurologist in Hamilton,Nj he did MRI of brain,t-spiine and lumbar. All my test showed some herniarted disc but other test were normal. I went to a neurologist at Jefferson Hosp in Phila,Pa and a Urologist at Jefferson. She did the urodynamics and I again was told that I had to cath for the rest of my lift but they were unsure at that point what was going on other than they knew my bladder shut down. I went to a neurologist in Princeton,NJ and he sent me to his partner within his group. He sent me for another opionion to RWJ Hosp in New Brunswick to a Uroneurologist who told me I have Fowler’s syndrome. No Doctor has ever told me since Nov 2015 of a Neurourologist. I cant take this pain anymore. I was told there are not many treatments available for this condition and it is rare. I have decided to have the bladder stimulator put in. This is the only hope I have. Life goes on!

    Open quote
    admin reply:

    The condition responds well to sacral neuromodulation.
    Are you taking Tramadol because that can certainly make things worse.

    Close quote
    August 31st, 2015 at 8:03 pm
  111. Spenny

    I am a 28 year old female who in August went into urinary retention after numerous UTI’s and kidney infections for 6 weeks leading up to the retention. I was hospitalised for 8 days but wasn’t given answers as to why this retention had happened.

    I was sent home with an Indwelling catheter and then was shown how to SC, I really struggled to do this myself and was in a lot of pain and struggled to get the catheter out. I ended up back in A&E and again sent home with an Indwelling catheter.

    I seem to get a lot of pain over my bladder but after searching the internet I think this is bladder spasms.

    I had a cystoscopy and this was clear. I am now waiting for urodynamics test. Again from scrolling the Internet and coming across fowlers syndrome. I wondered if you could offer advise on any hospitals across UK private or NHS that would be able to give definate answers on this. After 3 months of dealing with this not knowing what it is and being signed of work I just want to get to the bottom of it sooner rather than later. Reading about this syndrome it seems it can take a long time to be diagnosed.

    Open quote
    admin reply:

    You need to find a urologist who does sacral neuromodulation – they are likely to know about FS and an implant seems to be the best option.

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    November 13th, 2015 at 6:43 pm
  112. IG

    Hello,

    I had a SNS implanted last year it has helped greatly with my bladder problems however this summer I developed severe vaginal pain. initially I thought it felt like a UTI but the urine was clear. It started with what felt like a burning hot sensation and I also have abdominal and back pain. It seems to worsen when my bladder is full or after urination. I have had swab test done and everything comes back negative.

    Nothing seems to ease the pain other than a warm bath and sitting down is even uncomfortable. I often get a cramping sensation in the vagina from my SNS but it never causes me any pain.

    Do you think this could be related to Fowlers, the SNS or another bladder condition?

    Many thanks

    Open quote
    admin reply:

    I suspect this is not related to FS.
    Hopefully by now you have had other investigations – if not you should

    Close quote
    December 3rd, 2015 at 7:11 pm
  113. Dr Dhingra

    Dear Dr Fowler

    I have a lady with the above diagnosis and is pregnant with her first baby.
    1) what would be the best mode of delivery
    2) What would be the best gestation

    KR

    Open quote
    admin reply:

    I have taken advice from consultant in Ob&Gyne
    “We have found that, the pregnancy should be managed normally – the only intervention should be if there is an obstetric indication, such as pre-eclampsia, placental insufficeincy, etc.
    FS can affect the pregnancy with recurrent UTI, etc. So, if her voiding is bad, we have put in suprapubic catheters at 19 weeks to help with bladder control and she may need low dose antibiotic therapy.
    If she has a neuromodulator, we suggest it’s turned off.”

    Close quote
    December 7th, 2015 at 11:53 am
  114. SF

    Hi,

    Im on here to try and understand the condition which my sister in law (23yo) has been diagnosed with.
    She suffers from type 1 diabetes, the family have a history of PCOS.
    Her consultant has tried catheterizing with limited effect, and also electrical bladder stimulation with no effect. Currently she has a “flip-flow” fitted to by pass her bladder, however numerous infections are causing complications and seeing her regularly back in hospital.
    In addition to infections (or linked to them) are some excruciating pains she constantly experiences. It is believed that these infections are a combination of poor draining and multiple operations over a very short period.
    Im searching for a medical rather than surgical alternative to give her some recovery time from these infections and was wondering if Botox had been approved for use on the bladder, and what the success had been in draining.
    I look forward to hearing from you.
    Thanks,

    Open quote
    admin reply:

    Botox injected into the sphincter does seem to help some women with FS. Its certainly worth trying.

    Close quote
    December 14th, 2015 at 2:22 pm
  115. Charlotte

    Hi. I am a 42 year old female. I have been in urinary retention for the past two weeks after hurting my back. It’s gradually gone from a bit of passing water to none. So a catheter has been fitted for the last 10 days. Because of district nurses being unable to fit a catheter I have had to go to A&E twice to have it put in. The last time being Tuesday where they admitted me to find out what is wrong. An MRI ruled out the back problem causing it and I had gynaecology do an examination which showed no problems. I am being referred to the urology department as they think it might be Fowlers. 1st day back from hospital today with a flip flow catheter and I woke feeling very sick and faint which they have told me is a uti. I am trying to keep everything sterile and clean is there anything I can do to minimise uti’s. I am going to have a urodynamic test sometime after Xmas. Will this identify if I have this syndrome?
    Thanks for reading

    Open quote
    admin reply:

    You do say the retention came on after hurting your back – did you start taking pain killers, if so which?
    If you do have FS urodynamics will show you have a large bladder capacity and little or no muscle (detrusor) contraction but if they can measure the pressure in the urethra (urethral pressure profile) and not all centres can, that will be high.

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    December 18th, 2015 at 2:37 pm
  116. MJenny

    Hi. I am looking for a urologist in the US who believes that Fowler’s exists. I’m 53, PCO diagnosed at 23. Surgery at 28 started my retention problems. It has gotten worse recently and has to be addressed. Full retention. I am doing ISC but it is painful. Please let me know if you can recommend anyone, as everything I am finding is in the UK.
    Thanks

    Open quote
    admin reply:

    I don’t know the answer to this – you are right many US urologists have trouble with UK Fowler’s syndrome, but there are some that think its OK. I suggest you ask Medtronic for the names of urologist who do implants for ‘idiopathic urinary retention’ (idiopathic meaning unknown cause)

    Close quote
    December 19th, 2015 at 9:40 pm
  117. T. Jacques

    I am 45 years old and have suffered from urinary retention for 2 years (perhaps longer). It started with a UTI that would not go away and reduced urine stream, now I am unable to void at all without a catheter. I may also have PCOS, my Dr. suspected that I do, but have never received a proper evaluation or diagnosis. I have seen 2 urologists in the US (also 2 neurosurgeons) they have ruled out MS, Parkinsons and other causes. One of the Neurosurgeons says it may be Fowlers Syndrome, but she did not know much about it or how to treat it (she says it is a “rare disease”) . The only solutions offered by the urologists are: 1. use an intermittent catheter for the rest of my life or 2: try sacral neuromodulation (which has a small change of working because of my “large” bladder and also due to how long the retention has been going on). Does anyone know of a specialist in Fowlers Syndrome in the US and/or alternative treatments such as diet execise or anything? I do not want the interstim because of the low chance that it will work. I am very frustrated because I can’t find any answers – I was very happy to find this blog.

    Open quote
    admin reply:

    see my response to MJenny below, another American who wants to know about US urologists. Interstim is the best chance for not having to do ISC – it works well in UK for FS!

    Close quote
    December 22nd, 2015 at 6:01 pm
  118. Rschel

    Hi. I’m 26 years old. I have 5 children. A boy born in 2007 a girl in 2009 another girl in 2012 and twins born in 2014. The twins were csec. I’ve never had a problem urinating. But last week on Thursday December 17th I had a burning sensation. When I finished urinating I had the urge to go again. So I went but both nothing came out. But yet again I felt the urge. So I went but nothing. Since then I feel like my bladder is full but I can’t empty it. In the morning when I wake up to urinate. I go and it just stops and then comes pain. But I feel and know I’m not through urinating. Some days it hurts to walk. Other days I don’t want to go anywhere bc I need to be next to the bathroom. Please help! Do I have fowlers syndrome?

    Open quote
    admin reply:

    You need tests before your condition can be diagnosed as FS – FS is not the same as urinary retention.
    Find a urologist who will arrange for you to have urodynamics and measure your urethral pressure profile.

    Close quote
    December 23rd, 2015 at 4:58 am
  119. Irene

    Hi,
    When I was 26 years old I had a surgery because my ureter was obstructed and I was already having hydronefrosis. I had a permanent catheter put inside my ureter for three months. After been removed the permanent catheter in side my ureter through my urethra, which was awfully painful, I started having retention problems, I couldn’t urinate as normal as I had always done. Sometimes I would have an urge to go to the toilet and urinate a little and sometimes no urge and urinate a lot. It was as my brain and my bladder were not communicating and I couldn’t empty my bladder properly. Since my retention was not too bad I remained like that. However three months ago, now I am 39 I can hardly urinate and have no urge to go to the toilet. I am taking tamsulosina which I think is called flo max in the UK. It is working good I can pee much more now and now I have recovered the willingness to urinate, however the side effects are horrible, I am tired all the time with severe digestive problems and I am always wet… lcan’t go back to work.The doctors have no clue what is the cause and they don’t think it is surgery related although the problem started there.
    Could it be fowlers?
    Sorry for my English, I am Spanish. Here,it seems it is not such a big problem because doctors always say I can intermittent cath like many other women which according to them it’s not such a big deal. However, I feel I am getting a poor diagnose if any…and little help.
    Thank you very much for all your help

    January 14th, 2016 at 1:59 pm
  120. Irene

    By the way, forgot to mention, I have a large bladder capacity and little deteriorating contraction… The doctor did not say anything about urethral pressure…
    Thank you

    Open quote
    admin reply:

    Upper tract ie ureters troubles and hydronephrosis are NOT part of FS and suggest some more widespread disorder of muscle or connective tissue in the urinary system. Such a condition exists I am sure but it dosnt, I’m afraid, have a name. But to make sure it isn’t FS you need to have a urethral pressure measurement. If its high it could be FS but that wouldn’t explain the hydronephrosis, if its low, the retention is probably due to poor bladder contractability.

    Close quote
    January 14th, 2016 at 4:47 pm
  121. Jackeline bierman

    Hi I’m from Scotland I’m 25 years old and have 2 kids I have had this condition for the last 7 years my doctors her have been so bad that I have been told that it’s all in my head I have been transferred to Glasgow were I have been messed about so much I feel like giving up I have tried my best to have this sorted but nothing has provaled I am ment to be havin a SNS test trial done as an emergancy appointment and they keep messing me about I don’t know who to talk to or turn to I’m loosing all hope

    Open quote
    admin reply:

    It sounds as if you have got to the right place at last if you are having SNS. Patients are not called patients for nothing! – but dont be too impatient with the people who are now helping you. An SNS trial is what you need.

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    January 25th, 2016 at 8:29 pm
  122. Hanna

    I gave birth in nov 14,2015. After birth I could not pee so they Cathed me. Again after several hours still couldn’t pee but my nurse refused to cath me and told me to drink more water finally I started peeing but i guess it was overflow from a very full bladder. Then I was discharged but the next day I couldn’t pee anymore and they drained over 2 liters of urine. I had a foley for 2 weeks and then I was able to pee by pouring warm water over my labia (I guess warm water stimulate sensation for me). I have been self cathing, using warm water and sometimes I can pee on my own. The urge for me sometimes comes very strong and I need to pee right then and other times it’s faint and frequent . I feel the sensation more in the urethra:labia than the bladder area. I also have been getting cold flashes since birth and bad back pain and constipation. I have tingling sensation in my labia (it’s uncomfortable and feels like I may need to still pee or something). I also have shooting stabbing pain on the right side of labia near clit when I get up to stand up. I also feel either urethra or bladder spasms several times a day which makes me feel I still need to pee but nothing comes out. I just don’t think I have normal sensation of a full bladder anymore. Thinking back to how I was before giving birth I would recognize I had to pee because I had pressure in lower abdominal area not In the clitoral/urethral area. It’s been 11 weeks and all my urologist says is that it takes time to heal and that its nerve damage but he hasn’t done any tests and I am really wanting to know why I am experiencing this and it seems none of my doctors know anything about this. Do my symptoms sound like fowlers to u or do u think it’s more nerve related. The guy who did my epidural hit my nerve 2 times and caused my right leg to pop out and I think maybe that has something to do with it because my pain is on the right side . The cold flashes are very bothersome . What tests should I have ?Hope to hear from u soon. Thank u.

    Open quote
    admin reply:

    you obviously have some sort of urethral obstruction and need a urethroscopy ie telescope inspection of urethra to make sure its not ‘structural’. if not then a urethral pressure profile – in FS it would be abnormally high.

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    January 30th, 2016 at 8:58 pm
  123. Hanna

    Also forgot to mention when I do pee I usually notice two streams one from tethers and other from vagina , sometimes the streams shoot backwards or sideways. And the times I do pee I can’t fully empty my bladder because I still feel urine instead. Not sure if the lady who Cathed me has something to do with it cuz it hurt a lot.

    January 30th, 2016 at 9:49 pm
  124. Ella

    Hi, thank you for running this blog. I’m 24 and have been having urinary retention for about two and half years. I’ve not had any children or surgery. I’ve had shingles three times affecting my lower back (aged 15, 20 and 23), the last in September last year was very very bad and the retention has been worse since then. In November 2014 I had urethral dilatation which helped a little but not really. And ultrasound in 2014 was normal (no PCOS). An MRI of my lumbar spine and sacrum in February 2016 was normal just noting a grossly enlarged bladder. A year ago I was supposed to learn how to self-catheterise but a nurse decided it was all in my head so I was left for a year and my bladder got a lot bigger and more uncomfortable! I was finally allowed to learn how to self-catheterise a month ago but I’m finding it very very painful and it doesn’t seem to be working. It seems to sort of grip at the catheter which is so painful and I can’t seem to get all the wee out and still feel like I need to go after. I’m not a wuss but it makes me feel sick and I’ve actually blacked out when I’ve tried before. My kidneys get very achy and my bladder is often very distended (I’m a size 10/12 but often look pregnant when my bladder is bad). Do you think this fits with Fowler’s syndrome? Could shingles have been the cause? I’m suffering with weakness and tingling in my right leg and nerve pains in my lower back and feel like it could all be connected. I don’t think I’m at all hysterical or fixating on my bladder as the nurse has suggested, I really completely ignored it for a year after she said it was all in my head and it apparently got a lot worse. I don’t have any other problems with my health and eat well and don’t drink tea or coffee and rarely drink alcohol, I will have UTI symptoms the next day if I drink too much. My retention varies between 100ml and over 800ml. Any advice would be greatly appreciated.

    April 11th, 2016 at 10:15 am
  125. Gemma moring

    Hi I wonder if anyone can help. I have been diagnosed with the more extreme case of fowlers syndrome along with a non contracting bladder. Obviously I am in extreme pain especially when I get bladder spasms the pain is in my back and lower abdomen. I find it hard to stand for long periods of time. I self cathertise at the moment to pass urine as I have no other way and I have an sacral nerve stimulation operation due in November. However occasionally I get admitted to hospital due to my catheter not draining properly or even down to constipation which causes me issues when catheterizing due to the bladder being squashed. However the point of this message is that 2 weeks ago I was discharged from hospital with a leg bag. I work as a security officer and I made the choice to see if I could work my shift. On this day the head of HR see me and asked the issue at hand. I explained the situation and 20 mins later I was taken of the floor and into the admin office. I am no longer working as security officer at the moment but I have an upcoming occupational health assessment. Can j loose my job due to fowlers? What to expect? Will they deem me as disabled?

    July 5th, 2016 at 6:33 pm
  126. Lou

    Hi I was diagnosed with fowlers syndrome 1 year ago but had problems for years before! I have severe pain which I’m now told is unusual for fowlers and I have no capacity and no function so my bladder is constantly spasming! I have sns in but doesn’t work as bladder in this way! What would be the next step and also I’m told my bowels aren’t functioning is this part of f’s?? Also my urethra spasms constantly xx

    August 7th, 2016 at 6:46 am
  127. Pearl

    Hi, I’m 22. And my doctor says I have Fowler Syndrome.
    I’ve been on Omnic Osac for almost a year now and it helps. What makes my urine retention worse is spicy food and salty food. I wake up 3 to 5 times on many if not most nights to go to the bathroom to try and pee. I am on a basically steamed food diet and have lost a ton of weight. I have always had issues with controlling my bladder, ever since I was a kid. It’s either I’m dripping after I pull my trousers on or seem to want to pee but nothing comes out when in the bathroom- and that’s when I don’t have a UTI.
    There was one time when I had to get an ultrasound done and they told me to drink a lot of water. I drank a lot of water and was surprised that I didn’t feel the urge to go to the bathroom after an adequate time has passed. Well, i did, but it didnt feel as it should. Like i couldnt tell if i had to go or not. I know it sounds weird but its as if my bladder took a while to let me know that it was full. I waited some more and it was right before they called me in for the ultrasound that I felt like my bladder was about to explode. I was squirming on the bed as a nurse and i waited for the doctor to do the ultrasound. The doctor who scanned me was astonished and was like “why did you drink so much water?” I kept asking the doctor if he was done with scanning me or not because, well, I really had to pee. It was one of the most annoyingly discomforting experiences in my life. I was really going to just let it rip right then and there. When it was over I tore my way over to the nearest bathroom- and guess what? I only peed a little. I say “a little” because I expected more to come out after all of that trouble, but I thim it’s safe to say that half the quantity was out of my system, but couldn’t empty the rest of it. I did feel better after that, but when I got home I rushed to the bathroom again and peed (happily) some more. Ever since then, I pay attention to how much water I take in versus how much water I urinate. I also got used to timing myself, like i would go to the bathroom every couple of hours because I can’t depend on my bladder telling me, because sometimes it doesn’t.
    The doctor said something about a procedure that will widen the urethral opening and it sounds painful, but ge says its isnt necessary yet because Omnic Osac works on me (Thank God). Another thing, my grandmother had similar urinary issues as well as a number of my aunts from my father’s side. I suspect that since my urine retention has something to do with the food I eat that maybe it’s a digestive issue manifesting in my urinary system, but when I told my doctor he dismissed it. Thing is, I do have digestive issues like acid relflux and sometimes bloody stool, but I haven’t checked out with a digestion doctor yet. Mum suspects that a contributing factor to my urinary issue is those right low-waist jeans…but who knows, I guess.
    Thoughts?

    August 18th, 2016 at 8:11 pm
  128. Gillian Walsh

    I’m fascinated by this; I’m 58 have PCOS & EDS started with incontinence after birth of 2nd baby by CX. My father had EDS & suffered urinary retention from a young age. I have a very large bladder capacity & often don’t have an urgent to PU. I have a couple of times needing catheterisation but only in short term. I have very good pelvic floor muscles confirmed by Gyn physio but cannot stop incontinence if I cough even if I contract my pelvic floor. Was told by Prof Graham (EDS UCL)to rotate hips & tilt pelvis after I voided to empty diverticulum in bladder which works is this FS? Thx

    November 27th, 2016 at 6:03 pm
  129. Eliz

    I am 34 weeks pregnancy and the baby head engaged, I am think I am having contactions but because of a neurologic problems I have lost the use use of my sense of touch. I am unable to feel pain. What I would like to know is because I have fowlers syndrome and I retain urine, my pelvic floor muscles are too tight, would this stop me from dilating ?

    December 30th, 2016 at 2:16 pm