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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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I have had bladder retention for over 12 years now. I live in Australia and did not know the name for this condition until now. I have been self catherterising for 12 years, since an ultra sound showed how much urine I was retaining. I had a few UTI's to start with but I do not suffer pain and can't remember the last time I had a UTI. I was given a video to watch to show how to do it (by local doctor), and I used a small magnifying, fold up make up mirror on the toilet seat to start with so that I could see what I was doing, and relatively quickly I learnt how to catheterise without the mirror (though the first few times I though I was going to faint while doing it). I use a lubricant called 'Sylk' and lead a completely normal life, it just takes a few minutes longer to go to the toilet. I carry a small makeup style zip up bag in the handbag contained 4-5 catheters and lubricant. I purchase catheters online and sterilise them after use with 'Milton' baby bottle sterilising tablets. I have found through experience that you need to withdraw the catheter very slowly to ensure there is no bleeding or pain. I would be very happy to answer any questions if it would help anyone.





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Hi guys I'm very new to this but hope someone could help. I am currently 25 and have been suffering uti symptoms(no infection has ever been found) and retention for 13 years. One week ago i had an indwelling catheter removed after 4 weeks due to not being able to urinate at all. I can now urinate but it hurts so much... after urinating i have to self catheterize and usually find about 200-400mls still in my bladder. The urologists are useless. I have now lost my job due to having multiple occasions off sick and i am really struggling to live a normal life. Any ideas as to what it could be? Any help would be most appreciated x





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Please see my comment above ... if I can help in any would be happy to.

Hi, I have been having UTI's for 3 years now and I am catherterised. The hospital I am under haven't been very helpful. I was offered SNS which they don't fund and then I was offered catherterising myself which I am scared to incase I create even more infection. Then they mentioned fowlers syndrome which they cant diagnose me with because they dont know anything about it and they haven't been told much about it either. They won't even refer me to any other hospital. I am in so much pain all the time and some days I can't get out of bed. I have been laid off work for the last 3 months. I'm only 18 and I have no answers and no support because my family don't understand I am so irratable. I don't have life anymore, I don't go out because I am in so much pain and I am so paranoid because people are looking at me even though they are not. I have no fight left in me anymore.





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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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Sienna, I have been suffering with the most awful back problems and urinary retention for nearly 2 years now. I was blacking out with the amount of urine retained. I have now been isc for approx a year now and have at last been seen by the lovely ladies at The National in London. I too have awful infections and am constantly on antibiotics. You are not alone in how you feel, I sometimes feel so disgusting and unwomanly. I met a wonderful continence nurse via district nurses who gave me loads of different catheters to try. I have eventually found one that I can actually bear to use without making myself bleed. Surely you can ask your GP to ask for some support from district or continence nurse?? Please try, they have literally dragged me out the pit of misery I found myself in with self catheterising. It has taken me 10 months to get to grips with it. It is not an easy thing to do, so you are no failure, and it does affect your day to day life. Please ask for some support to help you, as soon as you find a catheter that is easy to use (b braun self contained with lubricant and bag for me) you will find it easier. Don't worry about doing it in public loos etc.. I still can't. I still lay on the bed, with the mirror, but I can do it!! I read my book for 10 minutes or so to take my mind off it and its all done. I am 41, and it has changed my life too. I wish you well, and hope you feel better soon x x

Hi Sienna, I'm sorry to hear how you feel but don't despair. In 1997 I took part in the SNS trials at The National Hosp for neurology & neurosurgery under Clare Fowler and have an SNS implant, at the time like you, I was depressed, in pain from self cathing (which I found & still do from time to time extremely painful) and frustrated but 17 years later and five stimulators later I can say I can still do anything I want too!By the way I use Hydrosil catheters which are supple self lubricating(have a bag of water included in pkt)and really comfortable to use. Your very young but if the SNS works for you, you will look back and think its all been worth while! As far as being a burden on anyone they all love you and want to see you out of pain and discomfort :-) so think positive,stick with the SNS and GOOD LUCK! (I'm 54!)

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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