My Story (Etaoinshrdlu's case)

[Matt M NH]

BTW, Here are a couple pics to illustrate what I mean.

[carld]

I know what you mean...I'm a composer on the side...

http://www.myspace.com/carldistefano

You can get a Thera cusion...Very expensive but I have had mine for 3 years now...

http://www.theraseat.com/

Best

[Matt M NH]

Great tunes!
Man, what a drum solo! That was really cool.
Thanks for the link.

[carld]

Great tunes!
Man, what a drum solo! That was really cool.
Thanks for the link.

Cool... glad you liked it...I normally don't post links of my music in this site...but I did so to show that once you learn to manage this condition, you can do all the things you love...If I can sit on my drum throne and pound the crap out of my drums and sit for long periods and compose piano melodies and not get a flair up...So can you...

Best

[Matt M NH]

Very reassuring! Thanks!

[etaoinshrdlu]

I've always had a ridiculously shy bladder. If I were out at a club, at a party, or out with a girl, I'd wait to pee until I got home. I never had any problems except for some bladder pain after drinking too much and holding things too long until I drove from California to Texas in 2002 and couldn't find a place to pee for hours after drinking a ton of soda. When I got there, I started taking Creatine and Sudafed (both possible factors), and three days later it began to burn when I peed. This turned into an ache in my penis and pudendum as well as in the right side of my bladder, but decreased urgency; the only thing that would let me know I needed to pee was that right-side bladder ache.

Symptoms resolved four months later, despite bike riding and weightlifting nearly every day. I was fine for half a year until I got myself into a similar situation (holding urine too long during a bus ride this time). Three days after that, my symptoms set in and haven't completely left yet.

Depending on the week (or two-week period, sometimes), I'm in one of these shapes:

50% of the time: Mostly fine. Symptoms are subtle but very ignorable. Slight frequency issues. Slight burning in the perineum after ejaculation, sometimes a mild pain in the tip of the penis. No sexual effects whatsoever; in fact, erections and ejaculations feel great during the act and can sometimes relieve any discomfort I'm experiencing.

10% of the time: A heavy, permanently full feeling in the bladder. Pain in the perineum upon standing or walking for long periods of time. Sex is again normal and refreshing, presuming the bladder's completely empty.

20% of the time: A dull ache in the perineum. This is the worst, though I can't explain why. It's a queasy feeling coupled with a loss of sensation and libido. Erections and ejaculations are weak unless I'm very excited, in which case I function normally. After ejaculation things just get horrifyingly worse. This seems to correlate with constipation, though I can't be sure which cases the other. This often happens after traveling as well. Urination can be extremely difficult.

20% of the time: Very little discomfort, just extreme frequency and sometimes bladder pain. Again, urination can be extremely difficult. Mild sexual effects.

(aside: my ex-girlfriend texted me and asked how I was doing and I said I was flarin' like a baron. hahahaha. )

I went to the Wise-Anderson clinic in November, and I felt great the entire time I was there. On the second plane ride back, I had to pee, and managed to get out about half of it. I sat there for another hour with the other half of my bladder full. I'm pretty sure that's what caused what I'm experiencing now, which is a flare of the worst kind.

I have no idea how to get out of it. It seems to be getting worse, despite me using my fancy Wise-Anderson skills... Stress might be a factor, as I'm dating a new girl and have a ton of gigs on top of a demanding job.

[webslave]

"Tons of gigs" — what sort of gig?

[etaoinshrdlu]

I play bass and guitar and sing in a few bands. I keep busy. Which is not always healthy for us types, I know. Forgot I'd made the old posts. Figured I'd just make an introductory one instead of just talking about pieces of the issue.

[webslave]

Unfortunately, playing in a band may be a risk factor for this disorder. I would say that it's almost impossible to perform in front of people with a relaxed pelvic floor (I may be wrong). Try to monitor yourself during a gig and see if your pelvic floor tenses up.

[etaoinshrdlu]

I always feel great during and immediately after gigs, no matter what sort of a flare I'm going through. But, yeah, playing a show is no good without nerves. Everything tenses.

If I stopped making music, life would pretty much lose its meaning. Not going to happen. It's who I am. If I didn't have this problem, I'd quit my job and just try to make a tiny living driving around and playing shows. Plus, I did take a break for a couple of years and symptoms didn't decrease.

I'm currently worried that the internal work I've been doing has hurt me. The "interstitial cystitis" component of my symptoms has been at the absolute worst it's ever been since I came back from Santa Rosa. Obviously, it helps a lot of people. I wonder if I'm doing something wrong.

[webslave]

Starting to work with trigger points does flare them up. Sorry. I have some in my shoulders from computer work and when they get bad and need manipulation, the first few days are hell.

[etaoinshrdlu]

The week I was in Santa Rosa and Tim was doing most of the work, I felt *fantastic.* Better than in a long time. Ugh, though... how does anyone ever get started on this stuff, then, and maintain a normal life?

[webslave]

So wait, you felt fine while the TrPts were being loosened, but now, without that treatment, they are re-forming and becoming symptomatic?

[etaoinshrdlu]

I was pretty much asymptomatic when I flew to California and had been for a few days.The first night I was there, after traveling, I had mild symptoms, which were slightly more severe the next morning (urgency, frequency, mild pain). But by that afternoon, when I had my first PT session, I felt fine. I'm not sure if it was the PT session or just the fact that I was experiencing a good period to begin with. On the flight back, though, I felt myself start to flare up again. Since then I've been doing mostly external work and relaxation and just sporadic internal work.

[webslave]

As Wise no doubt told you, there is no overnight cure. You now have the tools to begin getting better, and it takes months. You can count on flaring up now and then, but the normal pattern is for the flares to become less and less frequent and further apart. We've seen that recounted repeatedly.