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Hi everyone,
Second post here. I posted in the Medication board about Betmiga, but noone responded.
I'm Ozziebee, and I'm from Australia.
I've been IC in one form or other for maybe most of my life. I had bowel IC for all of my childhood, leading right up through Uni and beyond, but that gradually disappeared with time as I went through the last few years of high school and Uni. It has stuck around though into adulthood in some shape, mostly now as chronic constipation, fecal urges at 10 on the pain scale, and occasional unexplained skidmarks.
I changed gender from M to F in the mid 90's, having two surgeries (the original one, and one to correct urinary strictures w/ dilation mostly).
I noticed around 2010 or so that I started to get damp knickers. I really noticed this on a trip to the US in 2011. I didn't think much of these episodes, and didn't have them investigated. In the intervening period I had a few episodes of UTI's. Sometimes I ended up with really damp knickers requiring pads. Again, I kept thinking these were only transitory.
In late 2015, I started getting quite bad swelling in my lower legs and feet. My GP sent me off to see a cardiac doctor, who put me on a diuretic tablet to reduce the swelling, which caused me to pee quite frequently, and at work resulting in wet pants. I found I couldn't hold the urges. Those tablets were quickly stopped. I kept spotting and leaking into knickers and pads.
In 2017, I flew over to Europe. After arriving, I had to change, due to wet pants, and had continuing issues over there. When I came back home, I went to my GP complaining of the leaks and also a slow flow (I was often dripping and taking a long time to pee). I was referred to a female Urologist.
Initially we both thought it was my prostate, as that was not removed at the reassignment surgery. A ultrasound later had problems finding it, as it had shrunk under the effects of HRT, which was confirmed as usual phenomenon by an Endocrinologist.
Late last year, I had a cystoscopy under GA, which revealed urethral strictures. My bladder was otherwise ok. The urologist said at the time after I came out of recovery that she saw it, even showed pictures taken through the cystoscope. Right at the end of that discussion she suggested I may require a urethral reconstruction. Not unexpected, but still a bit alarming at the time. I later thought that she wouldn't have said that if she didn't think it was serious enough to warrant such surgery.
Early this year, I had another consult with her, and did a flow test beforehand. I peed about 360ml, and it was very stop/start and slow, but was borderline on the slow side near normal. We discussed my having a weak bladder, with all my signs pointing to a blockage.
The urologist sent me to get a Urodynamic study done in May. This failed, as they couldn't insert the cathether. I'd peed about 540ml or so over about three minutes into the flowmeter toilet. That graph was almost a flat line, very slow, but once the flow started it kept going. After the failed UroD, she took me into a room and we discussed what to do next. She felt that things were not right, and maybe I did need that reconstruction, so referred me to a Professor of Urology. We also talked about maybe Interstim for the weak bladder too.
I had a reasonable chat with the Prof about my history, and it turned out he knew the surgeon who did my reassignment surgery funnily enough.
On Wednesday, I went in for a cystoscopy by the Prof. The result has fairly floored me - he didn't see any strictures, and thus no reconstruction is required. He did see a bend in my urethra related to the reassignment surgery, concluding that this was the cause of the failed UroD study. Otherwise, my bladder looked ok.
So now I'm back to square one, with painful and uncomfortable urges leading to almost immediate wets, stress IC that comes and goes, and worsening fecal IC. I often have to stand up for some gravity assistance. I'm not dry for long. Because of the Betmiga, I wet my pants through heavy floods overwhelming my nappies. It was disconcerting going from no urge to full on in a few seconds, standing up, and immediately uncontrollably peeing causing wet pants.
I'm managing ok with nappies and pullups. I wear a nappy during the day at home, with stretch net pants over it, with either Gary PUL cover, or plastic pants over the top, then a onesie. Works well, and very rarely leaks when the wets are small and frequent. Pullups I wear interchangably with nappies for work, depending on mood, and how wet or dry I've been overnight. I wet in my sleep, have wet the bed, have even wet the lounge too whilst taking naps in the loungeroom.
I can't tolerate most of the urinary medications because of their side effects (drowsiness, blocked nose, headaches, dry mouth etc), due to work requirements and existing breathing issues at night, nor the ones which cause fluid retention. I also can't tolerate ISC.
Which sorta leaves me with no option but to see what happens at the next UroD study and management of this urge/stress/OAB.
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Quick response, finally. The Urologist is going to try a catheter with a Coude tip. Interesting! (Coude tipped cath is a normal cath but with a curved tip to it, so hopefully it'll get around the bend in my urethra, so long as the tip is pointed in the right direction I suppose).