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  • 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. Read more →

    i am 32 year olf woman, after a c section har urinary retention and was unabe to empty my bladder and after 7 years still have to have a suprabuic catheter which in turn has meant constant unrine and bladder infection what are my optons,





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    hi there retention sometimes happens after operations or pregnancy. but usually it doesnt last that long. have you been reffered to a gyne or bladder specialist? im 21 and i did have an indwelling for retention but then i learnt how to self catheterise. is this an option for you? its easy to learn but can be painful at first.best of luck let us no how you get on.

    Male, 51, diabetic T2,diagnosed 2 years ago, BPH, I am shortly having tests for urinary incotinence (started having accidents in October, now daily leakage) and chronic urinary retention >500ml. Have only just realised I may have a linked or unconnected problem with bowel incontinence, as over a similar period I have had 5 or 6 instances of barely making it to the loo or not(never previously a problem except with chronic diahorrea). I feel like there has been some reduction in the strength and time with which I can firmly clench my buttocks. Have also over a longer period often had numbness in left outer thigh and pain like sun burn over top arch of left foot. I feel nervous about bringing this up as I feel my current health issues are already likely to put obstacles in the way of future employment. Is it likely that they are connected?





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    Hi, I am sorry for your problems. I would definitely mention all those things to your doctor, its important they know everything as I do think they are connected. Bare with me please, this is a long reply but I think I should share my experience with you, even though in my case what happened is rare-please bare that in mind too when you read it! I'm a 30 year old women, not diabetic by the way so cant say if that is connected but the other symptoms you described are very similar to ones I experienced. In my case, I was born with Scoliosis (curve of the spine) and about 7 years ago the vertebrae from L4-S2 (lower part of the spine) started to collapse onto each other. This happened gradually over a number of years, (it went undiagnosed as I put my back pain, numbness in my legs and other problems down to the Scoliosis). The collapse of the vertebrae started crushing and damaging certain nerves to my lower limbs and bladder, during which time I experienced urinary incontinence, I was unable to completely empty my bladder, same as you with urine retention so I had accidents twice a day or more. I also started to develop bowel incontinence. I had numbness from my hips down on the outer thighs, down the outside of my legs and onto both feet on the sides and top of the feet which worsened gradually too and I had a lot of pain at times. I was eventually sent to an incontinence nurse who taught me to self catheterise every day so I could empty my bladder completely using single-use catheters and this stopped the accidents happening as often. She also referred me for a test of my bladder where they insert a tube to fill up the bladder with a liquid dye to see how much it can hold until you feel the sensation to pee, I didnt have any feeling to pee after almost 1 and a half litres of the liquid were put into my bladder (it should never hold that much!!) and was asked to have an MRI as he was worried the nerves were not communicating to the brain to tell me when I needed to go to the loo. All of these symptoms were not connected by any doctors I saw and I was waiting for an appointment for the MRI to come through when I collapsed with back pain and taken to hospital. Thats when they discovered through MRI and CT scans that the vertebrae had collapsed and almost killed the nerves to my bladder and I was at such a risk of losing the ability to walk and being in a wheelchair within 6 months because of the damage to the nerves to my lower legs and feet that I had surgery within a week to decompress my spine, release the trapped nerves and they pinned the vertebrae into place with rods. I still have problems and the nerves to my bladder haven't repaired themselves as they had hoped because the damage had gone on too long but I am walking fine and the pain is managed by injections and I still self catheterise about 4 times a day so all in all the surgery was the best thing to happen to me and saved me from being unable to walk again and stopped the other problems worsening. OK this is a long story and in my case very drastic, this kind of nerve damage is rare but the symptoms you described sound like nerve damage to me, definitely go see your doctor. I don't mean to scare you telling you all this but I think your symptoms are connected and you need to have your spine checked by a CT scan and the connecting nerves from your lower spine checked by an MRI. I am no doctor, I just know my symptoms and diagnosis of them very well, and know exactly what the surgeons found and how they tried to fix me!! I think self catheterising will be of great help to you with the incontinence if there is no other underlying cause. I hope this helps in some way and you get the treatment you need! By the way, I cope fine with work and as long as there is a loo I can catheterise!

    I am not a doctor but be sure you are looked at by a neurologist if possible because the combination of incontinence and sensory disturbance (eg numbness) are common experiences to people with M.S.

    I'm 22, and have urinary retention which has been corrected by sacaral nerve stimulation. The problem is i'm finding it very hard to empty my bowel, and find just trying to push or stain doesn't really help and i have to apply some manual pressure with my fingers, in between my vaginal and rectum. I go about every three days and sometimes i have bleeding. Also with my sns if i don't empty my bowel then i get increasing senstation down my leg and find it hard to put wait on my leg. What can i do to help? thanks





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    HI I am a 32 year old women who has experienced problems with urinary retention following an laparoscopy. I have to catheterise 4x daily. I have experienced sleepless night and waking up with discomfort/ pain in my lower back, resulting in me having to catherterise again. A urodynamic test found no stimulation in my bladder. This has caused me stress and emotional distress. My consultant recently gave me botox injections with no success. I just want to now what is causing my problems and Fowlers Syndrome sounds possible.





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    Hi iam 36 my problem is the same i have to catheterise every 3hours i take antibiotics every day .It all started when i was kicked in my back in my work place by 14yr old boy.It gets you down iam sick of going to hospitcal and not getting any answers.

    I recently had a orchidectomy performed on both of my testicles as i had a testicular torsion in my right testicle. After a month i am complaining of a sensitive perianal area including my left testes and also my anus, it became worse after an intensive weight-lifting workout. My anus feels painful and swollen. My GP thinks its acute prostatitis but i have no urinary retention or infection, but insisted i take a broad spectrum antibiotic to treat it. The pain is spreading towards my left back area and my groin with no swollen areas. Im beginning to doubt the diagnosis and i think its simple external piles. Can you help please? Male 25





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    For many years i have had Urinary symptoms brought on by undiagnosed Bilharzia.Amongst other problems i was diagnosed with CPPS.The wierd thing is i have had for around the same time as the Urinary symptoms bad bilateral knee pain-this pain comes and goes and feels like some sort of Infection and X-rays and Mri's have shown up nothing.I have heard of,amongst other things of things like reactive Arthritis.Can you offer me any help or advice?





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    I also had Bilharzia, was diagnosed and treated soon after (in U.S.) Years later have found out from blood test I still have this infection. Having knee pain, joint pains and all sorts of health problems. UK GPs and even doctors at Hospital for Tropical Diseases in London do not want to know!! My advice for anyone who gets this horrible infection, go oversease to find help, because you won't get it in the UK. I was just insulted, said symptoms because I am fat, and accused of having dfelusions of parasites - and this from so-called hospital for tropical diseases. What is the point of them?

    I have an implanted sacral neuromodulator for urine retention & incomplete bladder emptying. Recently i have experienced excrutiating pain in my groin & urethra. At the same time that the pain started i went into urine retention. I do know how to isc but every time i used a catheter i experienced horrific pain when using the catheter which lingered for several hours after. My urine tested negative for a uti but i was treated with several courses of antibiotics. The catheters that i have used are pvc free & do not contain latex. I did have an indwelling catheter as i couldn' t stand the pain of the catheters any longer. The indwelling catheter had to be removed as that too caused terrible pain. A couple of days ago i passed something covered in blood through my urethra - it felt rough. My question is could the problem with painful catheterisation be due to kidney stones? Also, what advice could you give? Age : 31. - female Thank you





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    Im 21 years old and I've found a lump/ something hard in my right tesitcle and have been having bouts of water retention within them should I be concerned?





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    Hi, I am 31 years old and have suffered from Minimal change Nephrotic Syndrome since I was 2. Since passing 21 the frequency of my relapses has vastly reduced from perhaps 2~4 a year as a child/teen, down to 1 every 3~5 years. I have been told by my renal specialist that it should not form into FSGS which I really hope as I have a very fit and active lifestyle and the thought of dialysis scares me a lot. I am relapsing at the moment; I am 5ft 10" and normally 13stone 2lbs @ around 14% bodyfat (muscular physique)and today due to the relapse that i'm currently having I am now 15stone 2 lbs. Obv this is all fluid retention. I am on prednisone 50mg ED, furosemide 80mg a day (not really helping with the water retention)and stomach acid reduction tablets. I have reduced sodium as much as possible and have tried to increase my Vit D / calcium uptake. Anyway cut to the chase, i have a strange question about my water retention. I know the fluid cannot be drained from subconscious layers however today a lot of fluid has collected into my scrotum giving me a huge Hydrocele, to the point where i can barely walk as its so in the way! I know Hydroceles can be drained with a needle and syringe and i am trained in self administering IM injections and have had much practise. While this fluid is in the scrotum, could I self drain it at home to relieve the discomfort? I cant personally see any complications other than the usual 'infection' or hitting a vein/nerve, but I will use genuine medical sterile equipment and alcohol swabs to clean the area. I know once my urine albumen levels are back to normal this fluid will go on its own but i also know i am supposed to keep exercising to prevent blood clots, this is extremely hard when it feels like i have a small cantaloupe melon stuck between my legs ha. Anyway, many thanks for your help -I know its probably a silly question to ask! Ryan





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    What is the cause of crippling pain in the ankles and heels of my feet? For the last 4 years now I have had swollen feet. It used to arrive in the summer only and in the first year it came occassionally with travel. I assumed it was water retention as my feet do look really big. However, it is the pain that is really crippling me now. First thing every morning and after tea each day my feet give me such agony it is difficult to walk. In the morning when I wake I hobble to the lavatory wincing in pain with my feet. Recently it hasn't just been pain in the ankle joint but the heel of the foot. After tea when I raise my feet so that they are above my hips, ie as I've been told this is good to clear water retention. I find that when I need to move to make more tea etc I have considerable pain which causes me to curse. During the day when out, I can also feel and hear every knee movement and sometimes my hip or spine joints clicking. I have recently had a bone density scan and it reveals Osteopenia in my spine, but my knees and ankles are clear. In view of this what is causing this pain? I must admit I am getting worried as I do not want to become crippled as a result of my painful feet especially since I have 18 more working years.





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    I posted a message earlier today and would just like to give advice on getting more information on the sacral nerve stimulator. After several bouts of urinary retention I was referred to a urologist who specialises in women's urinary problems and was put in touch with a consultant urologist who told me about the stimulator and the urologist would be able to let you know if you are suitable for this implant.





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    i am 16 years old and suffer from urinary retention, as i have now had urodynamics studies taken.yeah the place where you had the urodynamics done if not then go to your GP thne they should be able to tell you your local places where you can get this test done, as this is what i had tried

    Hey. Im a 19 year old female and have suffered from urinary retention and incontinence since the age of 13. I have been emergency catheterised at least 20 times. I have been unsuccessful with Intermittent Self-Catheterisation. Despite this I am very active and enjoy sports but have to wear a pad everyday. I have seen doctors before but they have been inconclusive about what to do. It seems to be getting worse and I just thought I would ask if you had any bright ideas? Thank you





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    I'm not an expert at this, but i do have many problems with retention myself and as a student nurse, some understanding. I have met several people who have gone into retention following amatryptalin. They have all experience stomach pain that I remember and most of them resolved in time after stopping the medication. Hope it goes well!

    Hi charlotte sorry to hear about the problems you gone through.i can fully understand.i am 33 yrs old and i have myself been suffering everyday 24/7 for the past year with severe lower ab pains going into retention constant urges but not being able to pass water at all.at the begining so many admissions in n out of hospitals.my urologist av said its urinary retention and they did eventually insert an indwellin catheter only after a few months of my bladder contracting so much I was unable to keep the catheter in place so two months ago i had this supra pubic catheter put in to resolve my problems but still i suffer from I going uti severe pains urges and my consultant doesn't seem fully understand how horrible my lifes become and also as i can't get a female consultant i find it even harder to explain.ive previously never ad problem wi my bladder i all started after i ad a minor op and now my life is just living hell.on morphine patches tramadol and aving to be on antibiotics everyday miss a couple of doses then back to square one uti s.just reading ur article im thinking do U think i might av this fowlers syndrome i dont know what else to think.i need a proper diagnosis n the right treatment a live a normal life again.

    I have read your question and I would urge you to seek medical advice. My Father died from prostate cancer last year......and he had never been ill in his life but I can tell you that the last year of his life was unbearable for my Mother and myself. It had spread to all of his bones in the end and he had never been unwell until he had urinary retention the month before it was diagnosed, he ended up having to be catheterised not a pleasant experience I can tell you...not for him anyway. You owe it to yourself and indeed your partner so please do not put it off any longer. I will also say as I am sure you already know that any problem caught or diagnosed early is treatable in most cases. In the case of my father it was too late as he had already got the cancer. I do wish you well.......





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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

    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 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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    Hi Tiffany, here is some info about urinary incontinence and how to manage it http://pelvichealthphysio.blogspot.ca/2013/08/stress-urinary-incontinence.html

    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

    My mum's 86 and suffers form urinary incontinence. Is this prcedure also applicable for urinary incontinence?





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    hi my name is suzy, not so long ago i contracted Ecoli in my urinary tracked, it was very painfull and i was losing blood clots it scared me because i have had a hysterectomy so it wasnt to do with periods. i was given a course of very strong anti biotics which cleared it up, my point is how did it happen how does a person get Ecoli in the urinary tracted?





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    Sorry but you have a urinary infection most likely. Its normal in women so dont panic. Drink plenty of w.ater and cranberry juice or pineapple(thats what doctor oz says). You should also look into. taking AZO Pill which u can find in any grocery store. But importantly go take a urinalysis to see if it is a urinary infection. Hope you feel better

    Blood in the urine is a common problem. The medical term for red blood cells in the urine is hematuria. Sometimes blood in the urine is a sign of a serious problem in the urinary tract, while other times it is not serious and requires no treatment. Only after a thorough evaluation by a healthcare provider should blood in the urine be attributed to a non-serious cause. Hematuria has many different causes. Blood in the urine can come from any condition that results in infection, inflammation, or injury to the urinary system. Typically, microscopic hematuria indicates damage to the upper urinary tract (kidneys), while visible blood indicates damage to the lower tract (ureters, bladder, or urethra). But this is not always the case. The most common causes in people younger than 40 years of age are kidney stones or urinary tract infections. These may also cause hematuria in older people, but cancers of the kidney, bladder, and prostate become a more common concern in people older than 40 years of age. Several conditions causing hematuria may exist at the same time. Some causes of hematuria are serious, others are not. Your healthcare provider will perform tests to help tell the difference. If you have visible blood in your urine, do not attempt to treat yourself with home remedies. See a medical professional without delay. If you have a urinary tract infection, you will take antibiotics for 3-14 days, depending on what part of the urinary tract is infected. If you have kidney stones, be sure to drink plenty of liquids to help pass the stones and prevent other stones from forming. You may need to take pain relievers. Hope this helps you.

    It could be a yeast infection. Also i am 13 weeks pregnant an recently had an infection caused by the change in vaginal discharge, hormonal changes an urinary flow so its very common to get urinary tract infections an/or yeast infections while pregnant, so you never know have yourself checked out for both.

    I am very scared. I am due to have uterine artery embolisation in 3 days time. I am getting this done privately with my work health insurance. I have a fibroid which is 7cm, I had a fibroid for a long time which was the size of a pea. It has suddenly grown to the size of a tennis ball, which caused me urine retention, back pain and constipation. This is on top of my regular issues of infertility for 7 years, very heavy periods, painful intercourse and spotting between periods. I found the nhs unwilling to help for a long time. And passing me around from different departments alway telling me to lose weight. I hope this will help in my infertility and water retention and all other issues. Please email me if u have any experience in this.





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    HI'' you sound like you have blocked Eustachian Tubes..which i have suffered with myself for the last 30 yrs. It causes fluid retention in the ear drum, which makes a popping/ bubbling noise... Due to the retention, it can cause the ear drum' long term damage if care is looked into.(bone growth etc) I myself have had grommets as an adult for over 14 years, this equalizes pressure and the bubbling stops.... also hearing is better. Grommets are a small tube' inserted by a ear specialist allowing air into the ear drum area. Small ones last up to 2 years then fall out, larger ones which i have last 5 years. Unfortunately' they can fall out or be pushed with a cotton bud stick - so be careful! Also''ear plugs must be worn when in water, i find blue-tac the best ' as it is stick an allows me to still surf. hope this helps!

    I am really sorry to hear all the bad experiences people have had with this Syndrome,. I'm 45 years old and I was diagnosed with Fowlers Syndrome 10 years ago after suddenly going into retention. My GP would not believe me but I was in agony as hadn't passed urine for 24 hrs. He got the nurse to cathetarise me and she filled 3 jugs with urine. The GP sent me home thinking that had sorted the problem. By the next day I still hadn't passed urine and was admitted to hospital. I was there for a week and diagnosed with Fowlers Syndrom and taught to self cathetarise. My bladder did start to recover and then I was able to stop using the cathetars after 4 months. Everything was ok until I had to have an unrelated operation and I went straight back into retention. The nurses on the ward had not heard of the condition and didn't take me seriously when I told them I needed a cathetar. This resulted in quite bad retention and another episode of self cathetarising, which was very difficult after an op on my stomach. I was again able to return to normal after a few months. I was offerred the surgery but declined as since then I have seemd ok. It has made me quite paranoid about being able to urinatee when I need to, so I never try to hold myself. I always go the moment I need to. I have been extremely lucky that it hasn't affected m in the long term so far. However, if I have another operation, hopefully my medical records will highlight the fact that I have this condition so that they will automatically cathetarise me. I have been extremely lucky that this condition hasn't really affected me for the last 8 years. But I am aware that it can happen again at any time without warning.





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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

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