I'm currently experiencing worsening pain and bladder symptoms, the current diagnosis is a hypertonic/overly tight pelvic floor. I've gone through so many doctors, consultants, an A&E visit and hospital stay over the last 8 weeks which I found really tough. The urologist at the hospital was the only consultant to mention he thought it was a tight pelvic floor problem. I'm just concerned with the amount of misdiagnosis that went on (appendicitis!) that there's something else going on - but then again the urologist may be right. I just wanted to put all the info out there and see what anyone else thinks. I'll include all info here, some may be completely irrelevant but don't want to miss out something that could be important.
* I'm 33, and went through the menopause very early - my blood tests showed post-menopausal hormone levels at the age of 20. No cause was ever found. I took the pill on and off in my 20's but it made me feel horrendous and I made the conscious decision to stop taking it. I never discussed this with any consultant as didn't feel comfortable at the time - the pill made me feel very depressed. I have therefore been oestrogen deficient, up until two weeks ago when I started taking a newer brand of pill, and also vagifem.
* 2 years ago I was diagnosed with having pelvic floor spasm, which didn't give me any physical discomfort other than during intercourse. I had physiotherapy and things much improved.
* I had a tummy tuck back in January, healed really well, no complications. I had since commenced running again, and got up to about 20k in total per week.
* Around 3 months ago, I used a TENS machine with a Kegel exercise attachment. I only used it twice in a row, but on quite a high setting. For anyone who isn't aware of what this TENS machine does, it sends electrical impulses to the vaginal muscles (and maybe beyond) and makes them contract and basically do a Kegel. I had read somewhere that if you're running, make sure you're doing Kegels. I'm realising now that I think my pelvic floor was already really tight, and using this machine was a big big mistake as I certainly didn't need to make my pelvic floor tighter.
* Around 3-4 days after using the Kegel machine, I had a very sudden urge to urinate, out of the blue. Ran into the nearest shop, went to the loo and only a little urine came out. I remember feeling that maybe my bladder wasn't empty. 20 minutes later I got home, went to the loo and urinated as I normally would, normal urine stream. I didn't have another episode of this until another few days later. This sudden urgency situation only happened twice.
* I can't remember if it was before using the Kegel machine or after, but I went from sleeping 8 hours a night every night, to suddenly waking up after 4-6 hours feeling like I needed to pee. For a while I did get up and pee, now if I wake up I just fall back to sleep again. I've never woken up more than once.
* Soon after the 2 sudden urgency experiences, I started to get a slight dull pelvic ache. I thought that maybe I was getting a UTI, so took my emergency stash of antibiotics - no effect. Urine sample at the GP negative, but prescribed a different antibiotic - no effect. My urinary habits during the day at this stage were normal. I also started to get this feeling like I was wearing a belt around my abdomen when I wasn't - not uncomfortable, just a sense of pressure. Gradually the pelvic discomfort got worse - on June 6th I remember thinking that the ache was now becoming more of a urinary symptom - I was due to run a race that day and remember wondering were there enough portaloos! Instead of running I went to a clinic, they examined me and pressed really hard on my pelvic region and thought I had appendicitis. Off to A&E, they did bloods, urine sample, all normal. Prescribed different antibiotics, no effect.
* The pain and discomfort in the lower pelvic region started to worsen. Antibiotics no effect, was referred to a uro-gynaecologist. He felt it was lack of oestrogen, and a low-grade infection. More antibiotics, no effect. When I've previously had UTIs, I get the burning and sediment in the urine. Out of curiosity I peed into a glass, and it was like a snowglobe (sorry for imagery!). Second visit to uro-gynae and I mentioned this. He sent urine sample to the lab for growth etc. New antibiotic.
* Unfortunately soon after second visit, I had a horrid wallop of pain in the pelvic region which had me shouting. Next day called the uro-gynae and he said this was now outside of his area of expertise and referred me straight to A&E. Hospital stay two weeks ago of four days, had antibiotics, anti-inflammatories, painkillers etc, no effect. I had a cystoscopy which was incredibly painful, again cue some shouting and swearing! Urologist said my bladder wall was "perfect", and he felt it was a pelvic floor issue. My stomach muscles at this stage were also becoming constantly tight, like I'd done some sit-ups.
* I have since commenced pelvic floor physiotherapy. I have a LOT of trigger points. I may feel relief for an hour or two afterwards, but then I get bad urethral and/or vaginal burning. At the last physio session, the physio pressed against my bladder wall internally. Since then, my urinary symptoms have intensified. She said my bladder is over-sensitive and she can do some work to de-sensitise it. But now my bladder feels like it's going to burst. I know I'm not retaining urine, and my urine flow first thing in the morning is normal, but not so much during the day. I'm walking around all day with pain of sorts, tight stomach muscles and a constant urge to urinate, even though there mightn't be any need. I'm wearing underwear 2 sizes bigger, can't wear jeans as I feel it adds pressure over what I presume is my bladder.
I'm scared that I'm going to be stuck like this forever. The pain and discomfort is awful. I'm now on illness benefit and have been off work for 5 weeks. I guess with the no letup in pain and discomfort and it just seemingly getting worse, it's driving me a little crazy. I currently have no medication for the pain, the pain was so bad the other evening that I went back to the hospital I stayed in, with a referral letter from my GP, and they sent me home with one 5mg valium tablet. It certainly took the edge off, but now I'm left with nothing else for the weekend. The consultant at the hospital's parting words were, well bladder problems are often lifelong. I'm only 33, and desperate to get my life back.
Thoughts on all of this would be most welcome! Thank you 