I have been dealing with this affliction since April 6, 2007.
For the last 2-3 years prior to this I frequently had to use the bathroom: maybe 8-10 times per day. I went to see my GP back in 2004 and he had me do some tests. Everything came back normal. From that point on until April, I just dealt with it as frequency was the only real symptom I had.
On April 6th, 2007 I had the urge to use the restroom after masturbating. Right after that I continued to have the urge to void. I experienced no pain, just the constant need to void and this feeling of my groin area of feeling raw, irritated and inflamed. Although I never considered this pain, when compared to what I have seen other people post, it is pain just a different kind. As my bladder filled, there was no real discernible increase in discomfort. I just made myself wait for at least two hours before I voided again.
Even though I was suffering, being a normal male, I masturbated a couple of more times and each time my symptoms got way worse. Also, orgasms were very unfullfilling. The only way I can describe them is that they didn't feel complete. Finally, I just swore sex off altogether
From April 6, 2007 I had intermittent symptoms all the way through the beginning of September, 2007 pretty much every day.
From the beginning of September until October 13, I was feeling just about normal. After not engaging in anything sexual for almost five months I masturbated again. The next day I began to have significant symptoms again, characterized by the constant need to void, a feeling of my groin area feeling raw, irritated and inflamed. After dealing with this so long, these are the levels I experience.
Level 1 - Tolerable. I have a constant urge to use the restroom, but I can wait for a couple of hours. When I sit the feeling is worse than when I stand. I have a vague feeling of irritation and rawness that comes and goes from my perineum to the base of my penis. Standing is helpful.
Level 2 - Barely tolerable. The urge to go is strong. I can make myself wait, but it's difficult. It can be difficult to concentrate. Its' much more when I'm setting down. There is a feeling of rawness, irritation and inflammation localized in my groin area and between my perineum and the base of my penis. Standing makes the symptoms abate a bit.
Level 3 - I get anxious and cry. I can't concentrate on anything other than my bladder. The urge to urinate is very strong. I feel panicked. There is a very strong feeling of rawness, irritation and inflammation in my groin area from my perineum to the base of my penis. It's much worse sitting down. Standing does little to abate symptoms.
Level 4 - This has only happened two times. I lay on the floor in a fetal position and think about death.
From October 13th to November 2nd I was experiencing Level 1 and Level 2 symptoms daily. I have not engaged in any sexual behavior since October 13th. and do not plan to in the foreseeable future.
From November 2nd to January 4, 2008 I was basically normal again. I only had two bad days in December during this entire time, both Level 2's.
On January 4th, I went out to eat and ate a little bit of green chilie with my food. When I got back to work, I voided and when I got back to my desk I had to go again. From that day until today, February 8th, I've been at a Level 1 & 2 on most days.
Orgasms aways trigger my symptoms. I have tried to explain this to my uros (I've seen 3) and they all tell me that it is impossible. However, I know it isn't and it's infuriating that nobody believes me.
The only foods that seem to trigger my problem are orange juice, pineapple juice, coffee and now I discovered, chilies. I can eat everything else unless I'm symptomatic when just about everything not on the IC food list affects me negatively.
My uro put me on Alavil. I'm also taking fish oil, MSM, marshmallow root, Aloe Verde, Cystoprotek, Bladder-Q and a few others. The Alavil seems to help. I have been eating mainly veggies, meat and beans. I have gone to see a PT who has experience working with men with this problem. She found a lot of exterior triggers, one which made me almost jump off the table, but she stated that my insides just seemed "tight." The sessions with her seemed to help, but I wonder if she really checked me out thoroughly enough.
I have been diagnosed with LUDE, then possibly IC, and then CPPS. Then I read somewhere that they are all pretty much the same thing. At this point I don't know what I have,
I just know that I'm sick of it and I don't have any other doctors to see. As one uro stated, "Trying to figure out what you have is like trying to hold a cloud, we just don't know what's wrong and there is nothing else I can do for you."Does anybody here have a significant increase in symptoms after sex of any form? The only thing I can think of is that my muscles way deep inside are really irritated and inflamed and the force of an orgasm causes them to constrict and increases my symptoms. Any suggestions, advice, would be appreciated. This is a hard thing to go through by yourself.
