HI I'm looking for some advice on my condition. Over a year ago I started to get what I thought was recurrent cystitis. My Dr would prescribe antibiotics, and sometimes the infection would clear after a few days, other times it would not clear with antibiotics, All times my urine is clear. Last December my 'infection' did not clear up. I had urinary frequency and the desparate urges 24/7. I was answering the call and sometimes voiding around 40 times a day. This was the only relief from the urgency feeling, but it only lasted minutes as the urge was right there again. The pain in my bladder kept me off my sleep for many weeks and I didn't know what to do. My bladder was on fire.
My GP referred me to hospital as he did not know how to help me. After a few months of bladder retraining, my symptoms seemed to very slowly (after around 6 months) diminish to the point where I'd get a few days of being normal again, with a couple of days of bladder pain. This went on for a while. I've had urodynamics where my bladder was filled via catheter, nothing shows abnormal. I kept a voiding diary and my capacity is fine (said the uro nurses). I've been following bladder retraining - this appears to have resolved my bladder pain - and last month I had a rigid cystoscopy to check for possible IC under general anaesthetic where the urologist advised me that my bladder is fine but I had a urethral diverticulum below the valve of my bladder.
I have since had an MRI to confirm this - but I await the results. The uro nurses are a different section to my urologist. They have advised that if I do have a UD, then this is not the cause of my urgency/frequency, and that this kind of this is very rare. But I say - how can it not be the cause of my problems? Surely this thing must take a flare up and cause me the symptoms, otherwise - wouldn't I have this every single day if it was a bladder problem, or a muscular problem.
I Have an app with my urologist in 2 weeks time. I live in Scotland and I cannot find any other research here or web based communities where anyone else has exp this. At the moment and only for the last month and a half I have been having more normal days than frequent or urge days. When I do feel a frequent/urge pain, I am doing as directed and holding on as long as I can. This is helping me get through it - I think. I am 30 years old, no kids yet, sometimes intercourse is painful if I've been exp urgency, other times when I'm back to normal - I am fine. I don't smoke, I rarely drink. I am trying to see if my diet is affecting the way my body is with this thing, but to no avail yet. I thought cutting out sugar had removed me of my symptoms, but it just disheartened me when I realised I could still get symptoms without the sugar.
If my Urologist offers surgery can anyone advise me what to expect? I know I don't have my MRI results back, but I'd like to think that as I have seen an improvement in my symptoms that I might be able to live with this without being operated on? I feel lucky that I am not incontinent but I don't want to be left incontinent, or otherwise. This is very very frustrating as now I am almost back to normal instead of it taking over my life. Can anyone offer me any opinions? What other questions should I ask my urologist when I see him?
Many Many thanks, apologies that this is a long one
I had to fight with my old urologist because I was having pain in my right lower quadrant, and I also have a history of urinary reflux from age 5. Well, they found a ureterocyle, and underwent a cysto to have the thing broken. I was informed that it broke and was full of pus, and then for the next week, I was having increasing pain with urinating and being unable to urinate at all. I ended up having to use a tampon (without my period) to keep me pain free and able to urinate during the day. He placed me on Flomax, and the symptoms did not change. He sent me to a gynecological surgeon, who stated that my issues were not Gyn related. I had to fight to have my bladder surgery, after he could find nothing wrong with me on another cysto, and MRI. My only symptom was pain, and a huge post void residual. I ended up going in for a "hour and Half" surgery that took over 4 hours, because he found that I had a huge bladder and urethral diverticulum, where he had to do a c-section cut for one part, and the rest through my vagina. Needless to say, I have stopped seeing that doctor, because he didn't believe me. I am now seeing another urologist, who very proactive, and has actually fixed my reflux problem. The first urologist said that he could write a research paper on me, but decided that he "didn't have time". My recommendation: Go to a teaching hospital. I ended up needing back surgery as well, and I went to University of MD, and found a great surgeon.
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