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Conditions

Fowler's Syndrome

Fowler's Syndrome

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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've been diagnosed today. Petrified. Please can someone tell me what to expect. Currently got urethral catheter in but they want to swap to supa pubic. Are these better or just as bad?





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Hi I have fowler's syndrome I was wandering if anyone knew how many people in the uk habe this condition





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I have an I inflammed urethra with a stricture and slight retention. My bladder feels sensitive in increasing to painful if I leave peeing for too long, then after I pee I have worse spasms and shooting pains. Normal feelings of needing to go are not really there, but I can pass most of it. I don't have incontinence though. The uti I had is long gone. Could this be any of these conditions, on a mild level? I got really ill a month ago with frequency, urethra and bladder pain and IBS colitis, so wasn't sure if it was like a 'flare'.





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Hello I am 24 years old, I have a suprapubic catheter which I have had for nearly 1 year and have fowlers syndrome . I have reacurrent UTI and bladder spasms etc, and I take oramorph for pain almost daily. I feel secluded and lonely and like the only person in the world with this syndrome. My gp does not know how to treat the condition I have because it is so rare, I hardly see my consultant and the only professional I do see is my incontinence nurse who changes my catheter every 8 weeks . I am currently off sick from work at the moment due to the agonising pain from the bladder spasms . Scared of losing my job all because of this deliberating syndrome! ..





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Hi, since the birth of my son 6 yrs ago, I have had same issues. Retention, over active bladder and painful bladder syndrome caused by nerve damage during delivery.. I have to self catheterise, and spend most of my life in the toilet it seems. Even going on public transport stresses me... has your doc suggested sacral nerve stimulation? I am currently on a trial, if successful permenant device will be implanted. I hope something can be done to help you soon.. 6 years ive had this and it consumes your life. Ask to see urology specialist and ask about sns xx

Hi Tracy, I have been out for the SNS but it will take a long time as waiting list is long. Are we classes as disabled or have a disability as we are incontient?

Hi I have had fowlers syndrome since 2004 AND i was refer to claire fowler for test and then i had surgery i would see if anyone could send u for the test to see if you are suitable for surgery i have my surgery in 2oo7 and have not look back. I like u had awful bladder spasms and a suprapubic catheter now. Because i have the battery in my back my life has change so please please asked can u be refer to london and see if they can help you. If i can answer any question asked away

Hey, I'm having being referred for investigations to see if I have fowlers. It's looking likely. I was told suprapubic cath will be my only option because I can't pass catheters any other way. I would absolutely urge you to research the Mitroffanoff procedure! I fully intend to push for that, not the supra. It's your body, you have a say. I have other syndromes and such, it's really difficult. Your work place cannot get rid of you due to illness, you are protected by the DDA so try not to stress on that too much. Xxx

Hi Hayley, I'm 21 and have exactly the same problem as you, it's ruined my life! If you have any question or want someone to talk to please say xx

Hi Have you looked into complementary therapies at all? Arvigo Therapy may be very helpful.Take a look www.arvigo therapy.com As the bladder nerves originate in the sacral area,hence sacral nerve stimulation is recommended,this therapy works on both the bladder directly and the sacrum,also 50% of cases in young girls are related to PCOS ( Polycystic Ovarian Syndrome) any of these therapists will help with self care treatment regarding this syndrome and dietary advice. Also look at Castor oil packs directly over the bladder,they are anti inflammatory,and very healing,calming and relaxing both physically and mentally,sometimes if you feel you are able to help yourself a bit more you feel you are more in control of your situation rather than the symptoms taking control of you! The bladder can also be worked on via the reflexes in the feet,if you are in an inflamed state and couldn't tolerate treatment directly over the bladder just now,this would be using Reflexology. Good Luck let us know how you go on. Also Bach Flower remedies will help with your feelings of isolation( water Violet)

i am a 19 year old man experiencing exactly the same symptoms as you describe, in fact i could have written the post myself. i have spent a year being passed from doctor to doctor who shakes their head and doesnt know how to manage me. i currently have a 7 day morphine patch to help relieve symptoms although this is not great. today i have paid to see a private urologist and it is the first time i have ever heard of this condition. i now have to undergo further tests to see what they can do. there is a procedure for spinal nerve treatment although this is not guaranteed to work. i agree this is a living nightmare and is ruining my life. i am lucky i am just about managing to work however some days its difficult just too be able to stand up straight. i dont no when this nightmare will ever end.

I don't suffer from Fowlers but know someone who does. As a result I have been reading about it & it sounds so difficult to deal with. I just wanted you to know your message touched me and I am thinking about you (& all of you out there) having to deal with this.

Hi I'm 55 had a hysterectomy 10 years ago and have had increasing retention ever since I am able to void most but retain 50cc.. I experience uti almost constantly.I've had some success with feedback which I haven't seen mentioned here. I need to be more vigilant with the exercises. I have sucess with pressing on my bladder to help void. And standing up and sitting back down basically taking all the time I need to void as much as I can. I am very happy this forum exists. There is strength in numbers Anyone else with biofeedback experience? What are the side effects of catheterizing long term? I just discovered that there is a name for what I've got.





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i have intermittent problems with urinary retention since having prolapsed discs 10 years ago. when i was in a&e in the most severe pain of my life (having borne 3 children) the doctors told me it wasn't a problem as i wasn't incontinent. i was in a&e for 12 hours and it had been at least 24 hours since i had last pee'd when i went in, but they didn't feel that was anything to worry about. most recently i have had a total hysterectomy due to recurrent abnormal smear tests. since then i have noticed a strong offensively sweet odour in my pee (when i can let it go) and a constant lower abdo pain. my gp says it's nothing to worry about, but hasn't tested me for anything..... should i push harder for tests??? any thoughts would be very welcome





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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!)


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