Is this progression?

[Brooks Flippen]

I'm new to the board and, it appears, one of the few men. Please allow me a long story and short question. I have had, my doctor says, a relatively mild case of IC for many years, characterized by frequency and nocturia (circa 4-5/night). It's pretty much constant with the occassional rear-end (perineal?) pain in passing. I had a cystoscopy in early 1993 but this earlier doctor didn't refill bladder, etc and didn't see anything. In early 2002, I went to a new doctor who did a hydrodistension (sp?) and diagnosed me officially with IC (conglomerations, etc). For the past three years things have been basically stable - more of the same - but recently some more noticable lower abdomen muscle-like soreness and, now, a burning sensation on the skin near my privates (non-urethal, probably referred pain), especially when I am in bed in the morning. Since I have never had "flares" as you guys have, I worry that this new pain is permanent or, worse, the first stage of a long progression. My bladder size is normal and stable. Could this simply be a temporary flare, or do you think it sounds like something more? My doctor says blankly "You do not have progressive IC." Well, if that's the case, why are my symptoms getting worse? I'm confused and worried.

[vm]

:welcome: to the boards, Brooks! That wasn't a long story at all - trust me! ;)

What kind of treatment do you use? Do you take medication for your IC?

Is there a chance you could have a UTI? If the doc doesn't think it is progressive IC, then what does he think is causing the symptoms?

How is that for 20 questions? LOL Sorry about that - the info. might help others give feedback, though.

[kittymom]

First let me say :grouphug: WELCOME

Some people feel IC is progressive. I myself am not sure. I know I started a year ago with diagnosis and have been on different meds and have had a few different procedures.some helped some didn't.

the important thing is to get a Dr. to listen to you. because there is no direct bullet for IC you need a Dr to work with you so that you can feel better.

Hope you feeling better soon

[ICNDonna]

After you were diagnosed by hydrodistention did you feel better up to now? Some people with IC do experience relief for many months after a hydro. I do think it would be a good idea to give your doctor a call to rule out infection and discuss a treatment plan to help you feel better.

You'll want to read the information in the Patient Handbook at http://www.ic-network.com/handbook There's info there about the IC diet, which I suggest you begin if you haven't already.

IC is not usually progressive; only a very tiny percentage of IC patients get worse over time.

Sending warm healing thoughts.
Donna

[traceann]

Hello and :welcome: Brooks! I just wanted to get my welcome thrown in too!

I agree with the rest, talk with your doc. It could be a UTI, or whatnot. And if you aren't already using it already, the diet can be a huge tool. Maybe there was something you ate that all of a sudden the bladder decided it didn't like, but liked last week, lol. :biglaugh:

Again, I just really wanted to say welcome, and it's nice to see more guys posting!! Take care and hope to see you around the boards!!

Hugs,
Tracey :)

[Brooks Flippen]

Thanks everybody! I had no idea I'd get such nice responses. I am a big-time worrier and when this new burning developed, I immediately think it's all downhill from here ... I don't have a UTI, earlier DMSOcocktails didn't work, and I'm on nothing right now. My doctor, I assume, sees many bad cases of IC and mine must appear trival, so I don't push it. He says the only progressive IC is that which shrinks the bladder, and mine remains normal. I just fear that a new symptom - while still relatively mild - means more, worse symptoms to follow. Worry, worry, worry ...

[traceann]

Heh! I can totally relate to that! I am sooo overly aware of everything going on with my body, that I can over analyze things sometimes, but I have found that if it concerns me, I call my doc. No point in stressing about it, since stress can aggrivate it as bad for me as any "off limits" food!!! And I have found that depending where my body is at "physically" etc, things can affect me differently at different times, it's crazy.

Heck, again, if I was a bit worried about something my usual routine is to sound it out here on the boards, lol, then call my doc and just ask. That's what I pay him for! lol!!

Hugs,
Tracey :)

[vm]

Yep, not only do you have fellow ICers here, but fellow worriers! ;) A lot of us can relate.