www.incontinentsupport.org

I've answered this on other parts of the forum but I guess not here.
I'm ftm (female to male) transgenderd and in 2004 I had an oopherectomy (removal of my ovaries).
This caused my urethra to recess over time (which I didn't find out about until I went to the urologist last year and she tried to perform a cystoscopy but couldn't even get an infant catheter in me). This (we think coupled with my fall on an escalator last year which resulted in my leg being broken in 4 places has left me completely urinary incontinent.
I'm learning to deal as best as I can at age 38, doing better sometimes than others.

justej,

Wow! Your plate is indeed full. I hope we can be of genuine assistance; however, you present us with problems that are far beyond the ken of myself, and, I guess, most others here. We'll help as best we can, but we are limited.

I got into a car wreck that pulverized 3 inches of bone in my left leg (almost lost the leg). It also blew out all of the ligaments in my knees, and caused some spinal shock and bruising. At first I was diagnosed with functional incontinence where I just couldn't get to the bathroom in time due to a long leg cast slowing me down. Eventually that diagnosis became urge incontinence with the likelihood being the spinal shock, though again for the same reasons. Many other urologists have just said I have OAB, which I've been led to believe is code for "we don't know what is going on with your bladder". In the last couple of years I have also been diagnosed with a neurogenic blockage, where my sphincter isn't working right and keeps blocking me off from going. Recently, 4 different sphincterotomies have left me with a normal case of full incontinence where nothing works right and I freely drain pee- especially when I apply any kind of physical stress, but is also mixed in a little left over urge and blockage incontinence at times as well.

I guess in a way you could say I have all of the different kinds now.

Looks like I never answered this one either! I think I've mentioned on separate posts, but I'll do so again here too so I can join the cool kids on this thread! Well, I joined the Army and was so good at shooting that they voluntold me into the infantry. Then I ended up in Iraq, had such a blast that I forgot to bring my functioning bladder home with me. Instead I ended up with a broken one! LOL! Okay, jokes aside... I suffered from a TBI which was caused by being blown up on multiple occasions, suffering over 24 concussions and getting into over 32 documented "accidents" while guarding convoys on the MSR. One way to clear a route was to use our Humvees to push vehicles aside, hence the "accidents" which happened on purpose. It was like bumper cars for grown ups. Been throw the ringer with the VA finding out what was wrong but I've had help from here and made progress.

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When you arise in the morning, think of what a precious privilege it is to be alive - to breathe, to think, to enjoy, to love.

Marcus Aurelius

For me it is partly genetic (bladder and kidney problems in the family) and also possibly related to childhood illnesses (a very nasty UTI which developed into an infection of the kidneys and a sepsis at the tender age of 4 months). Getting an infection like that doubled with all the medications it took to prevent me from dying probably has contributed to my condition. Strong antibiotics and analgesics filtering through infected baby-kidneys tend to do miracles -both in good and bad. Of course life-style affects things, too. I've had to cut down on caffeine, but haven't quit coffee. It is such an important part of the culture here, and also tastes great. It's just that one has to be careful with drinking it. However, coffee did not cause my tendency to incontincence, it might just contribute to the OAB if I drink it in excess. But summa summarum it is a mixture of heritage and a really messed-up lottery.

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Linja-autojen ja rakkauden perässä voi juosta tai odottaa seuraavaa.

I have reached the conclusion that my incontinence and OAB is a result of abuse stemming from when I was a child (this conclusion was reached due to certain symptoms being around for a long time), as well as a side effect of medications that I took for cPTSD and Major Depressive Disorder that exacerbated incontinence issues in addition to a loss of proper sexual function 4 years ago. I apologize if this is a bit of TMI, but I would rather be honest. I won't really indulge those points further than stating them. While I no longer take psychiatric medications, my incontinence symptoms have not subsided in that time despite effort on my part to change my diet, work with timed voidings, and other mitigation strategies commonly outlined on other sites.

Prostate cancer/ prostatectomy

was in the army got sent to afghanistan as route clearance combat engineer, got blown up quite a few times in trucks resulting in multiple head injuries quite a few of which stacked up as Mtbi, didnt have too much issue at that point yet but a few months after back from afghanistan got into a car wreck where i flipped my car and hit the top of my head as the car rolled and caused another TBI and damaged the nerves that feel when the bladder is full and controls the sphincters to allow them to relax. once fully diagnosed was told it was build up of all the tbi and the last one that finally pushed the nerve damage over the edge to full noticability. now i have no control over the sphincters causing them to stay closed all the time until they reach muscle fatigue and give out causing me to leak all over the place. now since i refuse to use cath as i always get a uti after using them so i get regular botox to keep them open and looking at eventually a full sphinterectomy.

Andy, I know from personal experience that a urinary sphincterotomy will NOT fully open your sphincter if it is always clamped shut on you. I've gone through FIVE of these surgeries and still need another one to finish opening me up. While they do ultimately work, these surgeries are minimally cumulative at best. I guarantee that one surgery will not be enough for what you have.

Talk to your urologist about getting a full sphincter-ectomy instead (not the -otomy). It is a much more invasive surgery where they have to open you up to fully remove the sphincter muscle. Most won't want to do it because it's considered "extreme", but seriously- six surgeries is extreme when one would have done it. Also find out id you will need it done to both the internal and external sphincters like I did/do.

Also, if you do go for the lesser sphincterotomy, make sure your urologist does a full radial cut- every time. They can also do a single linear cut (usually per to doctor's discretion, and often not even explain this to you before the surgery). This method is done by cutting through just one part of the muscle, but it is much less effective in producing full loss of urinary control. The radial cut actually removes the inner most layer of muscle all the way around. This prevents the sphincter from closing as tightly, and eventually from closing at all.

Other possible options to you might be a trans-urethral resectioning, a bladder neck reconstruction, a urethral stent, or even a urethroplasty. All of these surgeries would allow you to continue peeing through your urethra so as to avoid catheters or urine collection bags.

I do not recommend a stoma as this bypasses your uretha completely by requiring you to catheterize a new pee hole at your belly button every few hours. Per my own research a stoma is fraught with its own problems yet urologist still seem to like performing it so they can "cure" us from needing diapers (which often is still not going to be the case anyways).

You do have these options even if your urologist doesn't want to consider them- let alone tell you about them. Do your own research on it all and be firm with what you want. One very effective method I got my urologist to consider even a sphincterotomy, was to frame it as a way to "improve my quality of life while helping to eliminate depression caused by my urinary problems". If you have any questions for me, don't hesitate to ask them here. You can PM me too if you prefer.

Thx for that info Brian didn't know all that. I hate them doing the botox every few months and that is what they want to keep doing but for like a week after that every time urine passes it feels like glass moving thru me another reason I refuse to cath for them as I was still having accidents between self cath. And I was talking about a full one with them and they would have to remove both as well as neither would open during the urodynamics tests they have done.