Conditions
Fowler's Syndrome
Fowler’s Syndrome, so-called because it was described by Professor Clare J Fowler in 1985, is a little known condition that causes urinary retention in women. The severity of the condition can vary, with some women having an intermittent flow of urine or going to the toilet infrequently, and others not being able to go at all. As the bladder becomes full, most sufferers will feel pain and be aware of the need to urinate without the ability to pass urine. These symptoms can cause great distress for the sufferer. The cause of Fowler’s Syndrome is currently unknown, and treatments for the condition are relatively limited and varied depending on the severity of each case. Someone with a mild case may be monitored and not given treatment, but for those who are more severely
affected, self catheterisation can be necessary. This involves the patient inserting a catheter into their bladder as and when they need to. People with a very severe case of Fowler’s syndrome may have to undergo something called sacral nerve stimulation. This involves an operation where an implant is placed into the lower back just above the tail bone (sacrum) in order to stimulate the nerves that control bladder sensation. Think of it as a pacemaker for your bladder. The treatments for this rare condition are not exactly straightforward
or pleasant, and the symptoms of Fowler’s Syndrome can be very distressing, but just knowing what they are dealing with can be the source of some relief for the sufferer.
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what is the side effects of a (interstim) neurosimulater?
Ive had Fowlers syndrome for 3 years - it really gets to me and depresses me so much :( I use to have a permanent catheter but now do ISC - although struggle quite a lot with it at times. I wish there was a quick fix!
go and see dr.Cronje in potchefstroom he plant in a device wich do the work of the bladder
Hi I'm 19 I have fowlers syndrome I self catheterised for a year and last week I had the sacral nerve stimulation tined lead fitted ... If this works and my bladder can release urine normally ill have it put in my bum cheek for 7 years
My 14 year old niece has had urine retention since September 2012. Currently she self catheterises and has undergone many tests/examinations throughout various hospitals in Belfast. Fowlers Syndrome has been discussed, can anyone advise on the process involved in reaching a diagnosis and how long this would take? I would appreciate feedback on this matter. Many Thanks
Hi Paula I have had fowlers since 2007. I was frist told i had it in 2004 I am from belfast also. I was taught how to self cath in belfast and had been in urine retention many times. I was sent to london where i meet claie fowler i had a sphincter emg done which diagnosis me with fowlers on the same day as i meet her. I then had my neurostimulator put in into 2007. My life as change so much for the better. No more urnie retention and i can pass urine by myself. I Wish u the best of luck and hope this has help. Anymore question please replay to this and ill try my best to answer u eimear
Eimear, I am Paula's sister and it is my daughter who has total urine retention. We have come up against a brick wall at the minute and her diagnosis is being stalled because she is under 18yrs old. I would be very interested to hear who your consultant was and how you arranged to be seen by Dr Fowler herself. Many thanks
HI paula I came up against the same thing. I was told i had it but no one did anything until my mum say enouage is enouage you can't treat her here. Im not sure becasue of her age would they need to wait and see if things got better. I seen a doctor in the city hospital he sent me to london. London has made life so much easier for me. I feel so sorry for your daugther at the monment as i know what she is going though frist hand it was a nightmare for me and life has change so much. Im not sure if you have to wait till your 18 for the test . I really hope u get things sort out soon as its no life the way things are for you. Which doctor do u see here ? Also you could maybe asked for them to send her and let london decdie
Hi Paula I am so sorry you came up against a brick wall. It is very hard. For 3 years I had the same thing happen to me until my mum say you cannot treat her here so they then gave in and sent me to london. I am not sure because of your daughters age if they want to see if it would get any better. I would think they should send her and let london decdie. They way i am now to the way i was then is sooooooooooo much better i feel so sorry for your daughter as i know how things are for her. Who do u see at the hospital. I really hope u get it sort out sooon
Hi paulA. I am sorry that you are having such a hard time with it all. I was the same in belfast no one wanted to do anything until my mum say enouage enouage and they sent me there in the end. Im not sure because of your daughters age do they want to wait and see if things will get better. But they could send u there for help anyway. Who do u see ? Im sorry i cannot be more used to you. I Wish u all the luck in the world as i know frist hand what u are going though
Hi im 28,suffered uti inf and kidney infections since I was 7! Then 4yrs ago woke up in severe pain not able to pee when got to hospital a catheter was inserted and 2litres came out of my bladder cannot explain the relief! I lived with a catheter at home for 2weeks til i got tests done and was diagnosed with fowlers syndrome 4yrs ago but back then when i tried to get information about it it wasn't available and had my first Apt today with consultant and i am going thru several tests to see how severe it is! I was taught to self catheterise myself and only did so when needed to but what i didn't know due to not enough info given about this i went for yrs without using a catheter and suffered re-occuring kidney infections cystitis and was told today that i shld use catheter to emolty my bladder twice a day til get tests done and he has recommended i get the operation on my back to get implant in only prob is i live in northern Ireland and have to travel to London to get the surgery! I'm hoping i dnt have to wait long on these tests i just tho it was maybe a phsycological thing all in my head for years til today and was told its a very rare condition for mainly women my daughter is 7 and is having uti infections etc im hoping its not genetic!
Hi Jenna I am also from belfast. I was diagnosed with fowlers in 2oo4. Like you i have to self cath i ALSO had a cathern in my tummey at one stage. I was sent to london for treatment to. Since then I Have had not look back I had a neurostimulator put in 2007 I do not self cath anymore don't have any pain and life is great for me. I hope it all works out well for you .Eimear
Hello Everyone, I have had Fowler's Syndrome probably all my life - it started causing me problems at 17-years and at 20-years I was referred onto a specialist who pre-ported it was in my head. I became ill at 33-years-old and was placed on medication which irritated the Fowler's Syndrome and in January 2012 I was given the diagnosis of Fowler's Syndrome. December 2013 I have had a neurostimulator placed in my right buttock the situmalator will be turned on on 7th January 2013. I will keep you posted.
HI I was diagnosed with fowlers In 2004 AND had the neurostimular put in 2006 I must say Life has never been the same for me. I couldn't have asked for a better out come. Im back at work don't self cath anymore and have just got married. So i hope anyone thinking of it will see this and know its great and life can change for the better big time. Good luck to you all
Further to my last entry dated 26/12/2012. My neurostimulor was turned on today 17/01/2013. Mr Chris Harding from the Freeman Hospital, Newcastle; diagnosed me with Fowler's Syndrome and operated on me within one-year of diagnosis (great stuff!). After a lifetime of pain and mysery Mr Harding has helped to improve my quality of life. I highly recommend - Mr Harding for dealing with Fowler's Syndrome. Keep up the fantastic work! Thanks Chris :)
I'm 22 yes old (23 in feb) & I've been dealing with FS since I was 18 yrs old. In 2008 I woke up & didn't pee or even think about peeing for over 24hrs. I then went to the ER & was told by the nurse at Kaiser "it's physically impossible to not pee for a day" then she put a fully cathader in me & drained out 600mg of urine out of my bladder. It then took my urologist 16 MONTHS to send me to a specialist urologist at kaiser in Walnut Creek Ca. Dr. Handel then diagnosed me w/ FS. Since Sept. 2010 I've had TEN SURGERIES by THREE different urologist. They all have put in the innerstem by Medtronics (bladder pacemaker) and its never worked. I've had 3 different surgeries just since jan 2012. In aug 2012 I traveled to LA California Kaiser (I live in Sebastopol CA) to have a surgery & get a 2nd pacemaker put in my lower back. My whole lower back looks like it's been cut up. I have 4 different 3inc long incisions all over my lower back. There's now not ONE urologist that will touch me or know what to do. I get infections monthly from self cathing. I've been fighting for a "normal" life for the past 4 yrs. Please ANYONE HELP ME W/ any ideas!!
All together the nurse drained 1000mg of urine out of my bladder that 1st time going to the ER. I don't understand how I can just wake up one day & not be able to pee.
Im 25 and also have just been diagonised with FS following having my appendixs out. After the opperation i could go at all however now i can but have the constant sensation of needing to go again. Its nice to know im not the only one, im finding it really tough to deal with espically at bedtime - any suggestions or help would be great.
i am 17 years old and i have recently been diagnosed with fowlers syndrome is there a cure for this instead of self catherisation etc...
Hi. I have had fowlers syndrome for 29 years. My symptoms started when I was also 17 years old, and have had to self cathertise 3 to 4 times a day. Unfortunatly my doctors have said there is no cure as yet, but they are trying too find ways to help and hopefully one day have a cure. It is hard at first, but please don't get to upset, as it will get easyer
My daughter is 26 years old and in a hospital in FL. She is unable to urinate on her own. Her bladder has scarred tissue due to years of forced urination. She is scheduled for a MRI on her spine. Can they diagnose Fowler's Syndrome from an MRI? If anyone has a successful cure for Fowler's Syndrome other than self catheritazation please share your information.
Hi As far as I'm aware, the only substantive test for FS is to have an EMG test on the urethral sphincter muscle. A thin needle is placed into this tiny muscle where any abnormalities can be seen. I had this done by Prof Fowler a few years ago and it took a while but she did eventually find the problem. There is no cure for FS but are these options: Intermittent self catheterising (which you know about) Supra pubic catheter (indwelling) if ISC isn't possible Sacral Nerve Stimulator implant (this can work but is not guaranteed- this used to only be undertaken at NHNN in London but is done in other locations now). This can be brilliant obviously but as with anything there are no guarantees. I had good results from the temporary implant but sadly, not when I had the permanent device implanted). Also, it is an expensive option which many Primary Care providers will not fund. I'm to sure how this works in the US. Initially, your daughter should see a urologist. That person can refer her on. I'm sorry I can't give you hope of a cure for this. I self cathed for 4 years until problems with my back meant I could no longer do it. It was only after this that I found the symptoms more difficult to manage. If she can manage to self catheterise and she has no other symptoms than retention (im not making light of retention) then hopefully she will learn to manage. It took me about a year to get my head around having to do this but it was then ok. I hope this helps.
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