Just wanted to say hello and give a brief history. I’m a 53year old perimenopausal woman. Started with severe bladder pain on 26th Feb. Admitted to hospital overnight and CT scan was clear except for two small fibroids. Still awaiting urgent gynae appt. Was sent home with pain control and told to wait for gynae appt by GP who wouldn’t investigate urological issue til fibroids were ruled out as being the cause of bladder pain. They did however agree to prescribing Mirabegron at my suggestion after speaking with a brilliant telephone advisor at Bladder Health UK. Some days later I was in so much pain so I rang 111 and clinician was very helpful. He said in 40 yes as an GP he’d never known two small fibroids like mine to cause such bladder pain. Upshot was he requested 2 wk wait appt with urology and prescribed Pregabalin for pain. Cystoscopy showed normal and healthy bladder and urethra. That was 24th April and I await (hopefully) a follow up appointment with Urology. My pain control is usually ok but I have the odd night (like last night) where I have alot of pain in urethra, seem to struggle to void, then through the night I have to get up every hour or so to empty a quite full bladder. This morning the pain is abit milder but still there. I’m going to work shortly but I’m exhausted. I suppose I’m writing this because I’m struggling with dealing with this all as I’ve never had bladder problems apart from odd UTI’s. When I have these flare ups it’s so distressing as there’s no pattern. I monitor what food I eat but no obvious causes; drink plenty of fluids (decaf and water). I can’t plan future events like holidays as I just don’t know whether I’ll be ok or in pain. Can anyone relate to this? Does anyone take Pregabalin and/or Mirabegron? Any advice welcome. Thank you for reading to the end…
Newbie: Just wanted to say hello and give... - Bladder Health UK
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Hi, sending you lots of sympathy as I know how devastating bladder pain can be. A few years ago I started with cystitis symptoms having never had them before. My urine samples were clear of infection. I ended up having a cystoscopy which showed no problems and an ultrasound of my abdomen and also to check if I could empty my bladder completely. A gynae exam was normal. I ended up having two courses of antibiotics, the second of which improved my symptoms but I was no way back to normal. Despite being in chronic bladder pain my GP pretty much dismissed my symptoms as my tests were all clear. My gynaecologist thought I had had a uti which just didn’t show up on urine samples and this had caused an irritated bladder so it had caused interstitial cystitis. She did suggest trying oestrogen vaginal gel as I’m post menopause and the urologist suggested treatment for an over active bladder but I had contraindications for both of those medications. After the initial problems I spent two years with recurring symptoms which could go on for six to eight weeks and I would just have to sit it out. My gynae said it might be due to shedding bacteria from the bladder wall. Three years on, fingers crossed, my symptoms are much improved. I’m careful what I drink and eat. Alcohol and stress def have a bad effect . I mainly drink water with the occasional decaf coffee. I’m careful about drinking plenty of water. I’m still up twice in the night but I just wanted to give you hope that things can improve as I had a pretty awful few years with a great deal of pain and little help from doctors after the initial tests. I remain convinced I had a urinary tract infection which didn’t show up on culture followed by either an irritated bladder or pain caused by bacterial shedding from bacteria embedded in bladder wall from the initial infection. I really hope things improve for you soon.
Thanks for your reply. I’m hoping that a follow up urology appt after my cystoscopy might shed a bit more light! I’d read that not all UTIs show up on normal urine tests.
There seems to be mixed views amongst doctors about the urine tests. My uro-gynaecologist definitely believed in a clear urine test not necessarily meaning you don’t have an infection as they are only testing for certain infections. Having read many contributions on health unlocked, there seem to be many women in chronic bladder pain with clear tests. Some have had improvement with pregabalin and treatment for over active bladder . I was told the treatment for over active bladder can take six months to start working. If that’s the case if I had taken it I wouldn’t have known which had improved my symptoms time or the medicine. Doctors worry about us getting resistant infections from taking antibiotics which is understandable . A friend of mine with similar sort of symptoms takes Hiprex which was the medicine women used to take before there were antibiotics for cystitis. But there is a question mark over whether it can increase likelihood of bladder cancer. I hope you feel better soon.
It’s a difficult one isn’t it. And to add to the mix there’s the issue of menopause. The Pregabalin helps with the pain but I have flare ups and I can’t quite work out what causes these flare ups when I suddenly need to keep emptying a full bladder. Then it subsides. I’m hoping a urology appointment soon will prove a way forward to a diagnosis.
Hope it goes well and you get some answers. Now I’m older I always seem to have a full bladder during the night. I assume your Gp has checked your kidney function and that you aren’t diabetic.
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