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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, im 21 and ive had retention since 2012 and ive been having indwelling catheters but learnt how to self cath around 6 months ago, its getting so painful cause im told to drinki alot due to reaccuring infections then i need to cath again. its like a vicous circle which i aint winning. ive had the trial for SNS but awaiting the date for the real one. I have no job now over this as it affected me so much. i cant believe it when people say that this isnt an illness at all, i never had the needle test but diagnosed me with folwers. Its feels like a losing battle, im now on anti depressants etc and cant be like a normal 21 year old due to not wanting to drink incase i need to cath and i cant. I just sometimes feels like im a burden on family, i wouldnt wish this on my enemy, im sick of it alll. sorry to rant im just abit uost with it all. i feel so useless and unlike a 21 year old :(





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I got diagnosed with fowlers syndrome early last year but had really had it since 2009, I tried all methods since last year I've been In and out of hospital my final resort was to have the sacral nerve, I'm currently waiting my surgery date. At the moment I'm fitted with a supra pubic catheter, I've had this since July 2013 and ever since I've had dressings on it because it bleeds and gunk comes out of it all the time and it's very smelly I'm constantly in with infection is there anything I can do to get rid of this smell and mess until I have my surgery, I'm 21 I've had to come out of my job and university and also deal with deaths in my family including my dad who passed 2011 and to deal with everything at once is very hard is there any suggestions thanks xx





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Hi charlotte I am very sorry to hear what youa have went though. Like u i have had a supra public in and had touble with it. I put manuka honey on my and it seems to help. I have had a sacral nerve in from 2007. Like u before that i had to give Up work and it was so hard. life for me now is so Different i am married and back at work the sacral nerve was the best thing i did. Good luck to you and if u want to know anything else just replay eimear

I have had urinary retention since my baby was born 4 weeks ago. Aparently due to 3rd degree tears. Had catheters in and out since, have now been self cathing since thursday. Does it get easier? Coz im sore constantly from it. I feel like I cant live like this, I cant enjoy my baby properly, scared to leave the house incase I need to go (can only self cath lying down) and forget ever going out for a drink. I honestly feel like my life is over, im 23 and have 2 kids that I cant fully enjoy and will never have a social life again. Sorry for the rant, but I realy need to let this out. Would I be able to request to get the stimulater fitted? I feel better knowing that theres people in the same boat but no one should have to live like this.





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HI im Eimear. No you have to self cath etc frist i feel your pain You need to get your doctor where you live to send you for test in london. TO see weather or not this is fowlers . I have had it from 2004 but didn't get my stimulater fitted till 2007. I would push your doctor to send you for the test. If u want to talk anymore fire away and i will try my best to answer you

I Just want to say I have had fowlers from 2004. I had to self cath and had long tream cath in. In 2007 I went to london and i have the stimulator Fitted I have not looked back from then. I got my life back complety started a new Job and i got married so anyone thinking about it I would say its the best thing to do. I did have a kidney infecton month after it going in. But from them my life is so different and i feel so luck to be given the change of getting my life back. so go for it if you get the change xx





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I have suffered with bladder retention for 6 years. It has become a normal daily routine for me to put pressure on my bladder to urinate. If I don't do this I may not be able to urinate at all or if I do it is a dribble and often doesn't fully empty resulting in me needing the toilet again in 5 minutes. I am unable to tell I need the toilet until my bladder is full, my stomach is bloated and I am in pain. I also get constant uti's. I am finally having the problem dealt with! I have had an ultrasound and due a cystoscopy in the next couple of weeks as well as a bladder.biopsy! Hoping they get to the bottom of this painful problem!





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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 Sarah, I have chronic pylonephritis - diagnosed when I was 24 years old however been told I have probably had reflux since I was 4 years old. I am now 44 years old and after 3 unsuccessful urethral stretches, ongoing interstitial cystitis, recurrent urine infections and failed attempts at intermittent catheterisation I have now had a diagnosis of Fowler's syndrome. I am having sacral neuromodulation in January after self referring myself via my GP to the University College Hospital. I will let you know how I get on. You are not the only one who suffers this way and a lot of people dont understand how painful and exhausting it is to have these symptoms. I hope you get the help you need :)

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





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