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I'm not even sure where to start, so I'll dive right in. I've had urinary issues for as long as I can remember. Frequency and urgency, mostly. I recall thinking in childhood that no one else seemed to go as much as I did but I accepted it as, if not normal, normal for me. Several family members on my mother's side had similar issues. I wrote it off, not knowing anything different, and learned to cope. Bed wetting stopped for me around 7; urinating anywhere from 2-8 times per night (and sleepless nights) was the 'improvement' that came after. I had very occasional daytime accidents as an older child, which I hid. I took to wearing dark pants only. I restricted fluids, became accustomed to the symptoms of dehydration. I refused trips and social invitations if they would put me in a situation where I wouldn't have immediate access to a restroom. I made mad dashes for the restroom in between 50 minute classes, if I lasted that long. My classmates noticed, commented, teased. This persisted throughout elementary, middle, high school. College. It's amazing what a person can get used to. I missed out on a lot of fun and, in retrospect, felt like crap much of the time. Fatigue, nausea, abnormally low blood pressure. All symptoms of the dehydration, most likely. And probably a good dose of anxiety over constantly worrying about making it to the restroom in time. But as long as I kept near a restroom and didn't drink much (I thought of it as buying time away from the restroom, and also as damage control), accidents weren't much of an issue. I at the very least had some 'warning' and if I took those preventative steps it was 'ok.' I spoke to no one about it, didn't acknowledge it if someone else brought it up. I was managing just fine myself, right?
College threw a wrench in my system. I could just manage hour long classes and I could leave if I absolutely needed to. Exams, however, were timed multi-hour affairs. Gotta love engineering. Leaving to use the restroom meant not completing the exam. Trying to push through meant terrible, distracted concentration--or worse. I dismissed the option of asking each and every professor for extra time and explaining why; I resorted to protection. Just for that particular occasion. Never around friends, never around family. It worked and I continued on, keeping it hidden.
After college, I found work in short order. The job required relocation (horror--I was suddenly without my mental 'map' of all the restrooms in town and had to start over with that) and frequent travel. I simultaneously enjoy and despise travel--again, I'm without a restroom map in a new place and then there's the dreaded 'fasten seatbelt' sign on an airplane. Or a too-long security line. Or traffic. Or any other number of things separating me from getting to a toilet fast enough. So again, in those circumstances--protection. When I was actually at work and at my desk, I managed as always with dehydration and hourly restroom trips. And so life went. I was managing. How well or not is a matter of opinion.
The final wrench in my system came with surgery. I should explain the nature of the surgery. It is only with this knowledge that the rest of my story will make any sense.
I was born with female plumbing--urinary and reproductive system, the works. This is why I draw parallels to the experiences of my mother and female relatives who have had similar urinary issues. But this is where our similarities stop. For nearly six years and under the guidance of medical professionals, I have been injecting testosterone which induced a male puberty at the awkward age of 22 and now maintains adult male physical characteristics. I had surgery three years ago to remove all traces of a female reproductive system and to reconfigure my genitalia into a more male format. Total hysterectomy, oophorectomy, colpocleisis; metoidioplasty with urethral lengthening, scrotoplasty, testicular prostheses. That's quite a list. My surgeon is skilled and well-respected, but complications are not rare for a urethral reconstruction. I anticipated things like a urinary fistula (thankfully did not have this) or a stricture of the urethra (may have this), the most common complications. Even post-void dribbling was not a total surprise, but what I do can be measured in ounces, not drops like what I heard about from others who have had this procedure. And I wasn't expecting what happened to my bladder control. Ok, I expected that at first. I had just had my insides and outsides dramatically reconfigured and had everything bypassed by a suprapubic catheter for nearly 6 weeks while the reconstructed urethra healed enough to withstand use. Reports of urinary urgency and frequency for the first 3-6 months are common, but after that urinary control should go back to pre-surgery normal. My pre-surgery normal was admittedly kinda bad, so when I had the catheter taken out and was having daytime and nighttime accidents, I was taken aback but not overly worried at first. I knew control would be dicey early on. I expected it. But I also expected to get better. Three years later and it just hasn't improved, not to the point where I can get away with not wearing protection much of the time like I used to.
Another new problem is I that I have become very susceptible to UTIs. Before surgery, even with how little I drank and with female anatomy, I didn't have trouble with UTIs. They have become a recurring, miserable fixture of my life now. My surgeon's only advice is to 'keep drinking enough water.' It does work, but if I allow myself to become dehydrated for too long--bring on the burn, especially in the reconstructed portion of the urethra, and the pain. And of course, staying hydrated leaves me wetting. A lot.
So that's where I am now and I'm trying to find some sort of resolution or reason as to why this is happening. My surgeon is an ocean away, so an in person check up is difficult (airfare, PTO). I am working with my GP in the U.S., who has been referring me to specialists. The first urologist was not comfortable working with someone with my history and anatomy. That's fine, better that come out sooner rather than later. After a few tests and follow up appointments, I was referred to another urologist associated with a university. I'm currently waiting for that appointment.
On a personal note, I outwardly look like everything I am: a young male with a busy professional life and an even busier, active social life. In some ways, just giving in to wearing protection--for all its annoyances--has given me the latter. I am no longer a shut-in, coming up with lame excuses to social invites if I think finding a restroom in time will be too difficult. Though realistically, I don't have the option of going without for more than 20 minutes and then only with immediate restroom access. And I'll probably still drip some.
The bigger issues are the recurring infections, accompanying pain, and the worry about what that's doing to my urethra, bladder, and kidneys. If I have a UTI, I feel sick and certain activities (like swimming or mountain biking) are just a bad idea. So I still decline invites for stuff I really want to do. And I hate that; at 28, I hate the limitation. And as a guy with my history, I laugh--so I don't cry--at the irony that Azo (cranberry pills, urinary analgesic) is stocked in the Feminine Hygiene aisle. Really. Lol. :/
So that's where I'm at. This is awfully long for trying to keep it short; it feels like I've left so many details out, but they're not relevant to the overall 'life history' I just shared. Material for later posts, I guess. I'm not sure what exactly I'm hoping for in joining this forum. Perhaps just a place to vent with people who might 'get it' (at least some of it), rather than driving my best friend or girlfriend crazy by griping to them about depressing medical stuff too much. I don't want to be that person who is always a 'downer.' Maybe I just want a place where it's OK to air these thoughts out, try to make sense of the situation I've found myself in, and at least feel useful when I can share a tip or coping strategy with someone else.
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