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Conditions

Fowler's Syndrome

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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Hi am 24 and having problems with passing urine,I get pain in my bladder when it's full like a burning sensation and the flow is none or very little and have to force it,I self catheterise now as a result and I am under urology and have been for two years but no further forward I get Uti and bloated all the time, I have had two urethan dialitation and a camera in my bladder but nothing was found..am really low as it feels like no one believes me in the urology profession don't seem to be doing anything :( please help me





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Hi I am 28 and have exactly the same issue. I had alot of problems with constipation and abdominal pain that they were unable to find a cause for. Then a couple of months later I got admitted to hospital for urinary retention. I just couldn't empty my bladder no matter how hard I tried and I lost all sensation of needing to urinate. I just get severe abdominal cramping when my bladder is full. This is still ongoing! I also have to self catheterise 4-5 times a day and have been doing this for just over 1 year now and the lack of answers and information is really getting me down. I have had various investigations and procedures including a urodynamics study, MRI's, CT's and ultrasounds. I was under urology at 1 hospital but I felt that nothing was being done to find out why this had happened to me and they were not providing me with any long term solutions so I requested for my urology care to be referred to a much nicer hospital with more specialist consultants. I am due to have a cystoscopy at this hospital. I get constant UTI's and it has now come down to my body being resistant or allergic to the stronger oral antibiotics so I have to be admitted for IV therapy every time I get a severe UTI now. I have an appointment with my new consultant on 11th April and I am hoping that he will be able to come up with some answers for me and provide me with some alternative long term options because I am becoming so depressed about the whole thing :( Its nice to know I'm not alone!

I have since been diagnosed with fowlers but still in the same pain :(

I am 26 years old and have been dealing with bladder retention for the last 4 years. Over the last year it has gotten worse happening more frequently sending me to the ER weekly. I have scopes done cystoscopys MRI's nuclear dye tests everythibg my results keep comming up clean and i get the impression my doctors think im making it up. The emerge docs have said many times that its so unusualbecause of my age. I was once told to "just relax and go pee" as if it were that easy. I live in Canada and im seeing most of these forums are all in the UK, i dont think this is a recognized syndrome over here. I feel that my quality of life has been stripped from me and no one is offering any way out. Any suggestions?





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Hi Stephanie.Just wanted to say that I know what it's like.I don't have fowlers syndrome but I do have to self catheterise everyday due to a neurological disease,I'm 17.I really hope that you find an answer.Best wishes.

Omg,i am reading these responses in tears,only a couple of infections,but not being able to wee properly for ten years,since the birth of my first baby.i cant drink,coz getting desperate quickly and feeling tipsy,mean i cannot go.ive been catheterised a fair few times,had to have one put in after an op to remove my call bladder left me weak and nurses watching me all the time meant i was under too much pressure.had a scan and cameras up there ,looked ok,but wad too terrified to do a flow check as i knew filling my bladder up and having to empty under pressure wouldn't work.i panic about things like what if in caught in an armed robbery in a bank?my bladder will explode,the pain and being terrified is indescribable.and yes,docs and people assume its all in your head.maybe now i have a reason,a label for it.they are tears of relief that in not alone.

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Hi, I have been suffering with symptoms of fowlers syndrome for 16 months now and have a spc fitted but getting continous infections in spc area and recurrent uti's. There are no specialists where I live and was wondering where people have had to go to find someone who deals with this illness, many thanks in advance. Rachel.





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Not sure where you live Rachel, but I initially got referred to London through Liverpool Women's hospital. Failing that, your GP can refer you to UCH (University College Hospital) London as I am told they are the only specialists in the UK. I hope this helps. Kirsty

I have interstial cystitis, bladder retention and have to isc. I constantly suffer with UTIs and at times bladder spasm! I am 40 and have been told it is Fowlers Syndrome , I am confused as have been plaqued all my life with UTIs and thought that fowlers was in younger women. I can't hold down a job as there are times I am too much pain to leave the house. Constantly on anti biotics and pain relief. I did have a job but had to have a lot of time off sick, decided it was fairer to leave than let them down. I get very down about it, am I the only one who suffers this way :-(





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hi im 21 years of age and got diagnosed with fowlers when i was 15 and had to isc but when i fell pregnant at 16 the fowlers left me and i didnt have to do it anymore but they when i just turned 20 it came back but this time really bad were my tubes collapsed on me and had to get rushed to theatre to get a cathetar inserted it caused me nothing but bother but for the last year i have went back to isc but have been in and out of hospital constantly with really bad urinary retention were my uretha and bladder has went into spasm n wont let me insert my own cathetars and they have had to catherise me with all this goin on they have said my case is only mild and there nohing they can do for me and all i can do is keep going upto hospital nearly twice aweek what do i do as it running me down and i am fed up with having to leave my now 4 n half child can anyone help me





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Hi Kirsty, I'm 37 and have been in retention since August. I know exactly how you feel. I have been in and out of hospital for months with various catheter infections and real trouble with ISC. I feel that the hospitals don't know enough about my condition so I get left for weeks on end. It does get me down too. We should not have to go on forums to get reassurance and advice!!! Hope you feel better soon. Keep your chin up, you are not alone.

Hi shelly i font think doctors or nurses know enough about our syndrome i have felt like they think i am imagining it!!!! Ive been in hospital 48 times in the last year n half and has been kept in for 12 weeks in total and tes i find it very down grading that you have to look up on the internet just to find out what treatments there is hope u get some relief soon cause I know how bad the retention is as my bladder has stretched and now holds upto 1800 mils and will end up needing an operation to take part of it away as well as maybe needing a pubic cathetar or what i am fighting for is the box put into my bk look up every thing you can about it x

Hi, Ive been diagnosed with Fowlers since 2009, and went through all the stages of ISC, SPC and a trial for SNS and now I have a Mitrofanoff. This was the last option for me and I'm going to be having my 3rd revision on the Mitro due to extensive leaking and a infection that is laying dormant. The trouble with Fowlers is nobody at my local hospital haven't got a clue what it is and they don't know what a Mitro is. I just wish there was more information given to dr's and nurses about Fowlers and Mitrofanoff's. If anyone would like any information just message me on FB. Helen





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Hi I have had the stimulator fitted in my back to help me urinate due to not been able to pass water at all times. After a year of hell and having to self catheterising 4-5 times a day I was told this pacemaker was the best thing for me, I carried a electrical box around for a month whereby the wire was attached to the nerve and I could control it during this time my life changed completely I could pass water without any need for cathador. I strongly suggest those suffering mention this to gp as it will change your life as it has for mine. However I feel as though I have a infection at the moment for those out there and been through the operation like me do any of you get this?





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Hi Louise, this must be fate. My bladder has been in complete retention since an operation in August. I have been told I have an atonic bladder and I have to catheterise up to 8 times daily. At the moment it's horrendous as i've suffered a prolapse of my bladder and bowel, which has crushed my urethra. So, I put it off for as long as I can. After my operation to rectify my prolapse, it will make ISC more comfortable but, I still hate it and I avoid going out. I was wondering about the sacral nerve stimulator and if it will help me. It is reassuring to hear of somebody who has had it done. You don't say your age. I'm 37.

Hi Shelly and I would definitely recommend it, I'm only 17 and been through everything they possibly can do and it honestly does change your life, I missed so much education which has effected me I have been in hospital 18 times since last June however you seem as though you are suffering more symptoms than I did. Go and see your gp and they will refer you to a specialist. This pacemaker costs a fortune apparently so it takes a while before your told you can get it after they have examined you time and time again!

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This is what came up when I did a search for Sacral Agenisis my daughter has had it since birth she is now 12. she was catheterised from 6 months and has self catheterised since she was 31/2 anyone else heard of this





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Hello to all..new to this forum but need help. I'm so afraid to go to the er but I do believe this is what's wrong. I told my PC dr & the neurologist & also the pain center I go to for back & neck pain headaches & fibromyalgia as well..they're all passing it off to another dr. I live in a small town and because there aren't many good drs. I'm at a loss for what to do. I haven't read anywhere that any issues I'm being treated for cause this problem..I do have a history of ovarian fibroids but I am also older (45). Can anyone tell me what I should do? This has been going on for over 7 months & It's just getting worse every day. Thanks for any help.





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Hi, would anyone be willing to discuss 1st stage SNS? Just had my op a week ago and have lots of questions





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Hi Jen I had my in 2007 if u have any questions asked away and ill try and answer you

Hi Jen, How are you now???? I am currently in the process of treatment for my Fowlers and wondered if the SNS is a success.





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It looks like no one else has asked this question, so please fill in the rest of your details below.





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