Resources for coping with stricture management

[poortonykrause]

I had my stricture from when I was 10 years old, possibly from a bike accident. I didn’t start to feel any real pain until I was 14 and I noticed blood in my urine. They did a scope and scraped off a little bit of scar tissue without diagnosing it as a stricture. They sent me on my way without any instructions for follow-up. A few months later the weak urine stream and need to strain when urinating came back but no blood, so without any diagnosis of something being wrong or out of the ordinary (just a “little bit of scar tissue”!) I just chose to ignore it.

Flash forward 15 years and I discover what a urethral stricture is. I go to the amazing Dr. Gelman in Orange, CA and get a diagnosed and he performs a urethroplasty which allows me to pee freely for the first time in as long as I can remember. I can also ejaculate after this operation for the first time EVER without any pain or difficulty. This is something incredible because when I had my accident, I had not yet started masturbating yet.

Two things emerge from this situation — 1.) I realize before the surgery I had the constant urge to urinate without realizing it and 2.) I realize that sex, no matter how pleasurable, was always a little painful.

I notice all the literature on this syndrome is focused solely on its mechanical dimensions and almost none of it addresses the psychological aspects. In discussing my experiences with a close friend, he pointed out that what I was describing sounded like an “invisible disability”, and truly, if you think about what disability means (a physical or mental condition that limits a person’s movements, senses, or activities), then it truly is one, since a stricture limits one’s ability to urinate and ejaculate properly.

I wonder why there are no resources for people living with this condition to seek the kind of support that people with disabilities rely on. This website seems like the closest thing we have, but even so, I have felt alienated oftentimes throughout my diagnosis, treatment, and recovery. I am just wondering if others have have similar feelings of isolation with this condition and if they have also wished they could seek answer in a community environment. I am posting here because currently, to my knowledge, there are none. I think it would be great if we could set up some kind of community that would provide assistance to those going through this process that doctors could point new patients to.

[wentzel]

I am very impressed with what Ken has done here. There is precious little on the web that is not clinical. I have found a lot of solace here. I am still scared as heck but you all have answered lots of my questions. It’s great to know you are not alone. I feel a little less alone.

greg

[Adam dakak]

I completely agree with you about the lack or resources. 8 yrs ago i had a 9cm stricture removed using my foreskin. Keep in mind i was already circumcised. Long story short the skin on my penis became quite tight and it played with my kind a lot. I suffered some form of erectile dysfunction but it was purely psychological.i know this because i had no problen masturbating. These are things i wish were told prior. I also found tgat i lost sensitivity during intercourse. Since the surgery i cannot ejaculate normally. I have to squueze it out. Not a big deal but its nice to know about it prior. I still managed to have a child but through artificial insemination. I ended up getting over it as i never had a woman complain about it.

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