When a young woman who is otherwise well goes into urinary retention it usually comes as a shock to her and may puzzle her doctors. The urologists can find nothing obstructing the urethra (the tube which comes out of the bladder) and the neurologists can find no evidence of other neurological disease to explain why the girl’s bladder has stopped working.
When I first started seeing young women with urinary retention the medical teaching at that time was that the commonest cause of urinary retention in young women was “hysteria”. More had been written about “psychogenic urinary retention in women” than any other possible causes.
This struck me as wrong right from the beginning and the finding of the electromyographic (EMG) abnormality in the urethral muscle was the start of my trying to work out a different an explanation. Over the next 30 years various pieces of the jigsaw fell in to place and I have been greatly helped by the many research fellows who worked on the problem with me, and some great scientists, Prof William Chet De Groat from Pittsburgh in particular, who helped me understand the very complicated way in which the nervous system controls the bladder. It is not a simple story and at many stages the medical world was reluctant to be believe the latest twist in the theory as to what had gone wrong (and some are sceptical even now!) but I am content that with the recent realisation of the role of opiates (pain killers such as tramadol, pethidine, morphine [Morphgesic SR, MXL, Zomorph, MST, MXL, Sevredol, Oramorph] and Fentanyl), the story is better understood. There is however still much more to be discovered.
For while I did not call the condition “Fowler’s syndrome” but it gradually became clear to me, that the girls who had the condition needed a name for what they had got -, nobody else wanted the condition and other doctors who had sent patients to me started to call it that. So “Fowler’s syndrome” it is.
However something that does worry me now is that there are women being told they have “Fowler’s syndrome” when there is no evidence that they actually have they are women who have simply gone in to urinary retention. I worry that perhaps their doctors have stopped looking for other causes. Not only must other conditions be excluded, but the diagnosis requires some positive features, both in the patient’s history and laboratory investigations.
I’m sorry you have the condition – although it’s not a serious medical disorder which is going to cause death or severe disability it is very inconvenient and it’s as well you understand it as best you can. I hope you find this website helpful. Unfortunately I cannot answer individual questions but there is an email facility and a blog which will be moderated by nurses who know a lot about the condition. They will tell me if there’s a recurring question which should be addressed by an update to the website.