UCPPS - Prostatitis, Interstitial Cystitis Forum

Hello!
I was wondering about the current status of the Administrator, moderators
and the veterans of this site about your symptoms.
Since it's been a while that i've heard of progress towards healing!
(I need to here some encouraging news I suppose...)

I no longer have any pelvic pain symptoms.

My Progress: viewtopic.php?t=2919

I joined as a moderator when I first began the Stanford/Wise-Anderson Protocol (8 months ago), after having suffered for 4 years. I am significantly improved after 8 months, and I don't claim to do everything recommended by Dr. Wise (with 2 young kids and a long commute, it's hard to follow the protocol to the letter). But my life is not even comparable to this time last year. I still have a long way to go before I am where I want to be, but I more firmly believe in this protocol now than when I started it. All I know is that you have to look at it for the long term, and not pay attention to the short term when things are painful. I still get down a lot when a flare up comes back, but even these flare ups aren't close to what they used to be (it's just that my perception of them has changed now that the majority of my days are low pain).

Mike

Thank you!
Those posts were most encouraging!

Thank you!
Those posts were most encouraging!

Glad to be of help! I still need pick-me-ups like this too from time to time (about once a month when my pain hits the 1-step-back phase). It's very important, especially since I am still not fully recovered from this. If I lay off stretching and abdominal massage for more than a few days, my pain starts coming back and a flare-up will start. So I still have to be very dilligent and keep on top of things. I think the biggest difference for me now is that my mental state is so much better than it was a year ago, when I couldn't have sex (the pain wasn't worth it), and when everything I heard on the radio involved sex, or every TV show had a sultry scene, and all the locker-room talk of my softball teammates was about sex, and I just felt bad all the time. Things are much better now, and I feel somewhat in control of things and not controlled. And believe me, when my testicles were on fire, I was convinced I had a vans-deferens tube blocked as the pain felt so real - I don't even thing an actual blockage would have felt that much like a blockage. I am still amazed at how many places pain can be referred, and how easily symptoms can be created from completely remote locations.

Just hang in there and commit yourself to doing whatever it takes to get better. It's worth it!

Mike

I don't know if I'd class myself as a veteran but I've been around on and off for a while. I'm in my third year with PM now.

Reflecting on my own situation the best advice I can give is to stay optimistic and cheerful. Follow the healing protocol and don't be distraut by flares, but accept them for what they are.

My first year was by the worst as I had no idea what was wrong and the doctors I saw were only interested in giving me Cipro (which makes my pain far worse). My stress levels were through the roof which just caused things to escalate until my doctor had to give me large doses of diazepam just so I could function.

That is all behind me.

I began on a protocol of stretching and relaxation thanks to information gleaned from this forum and from reading A Headache in the Pelvis and bar minor flares I was more or less symptom free for the duration of 2004.

This year I have flared back up again, but it's by no means as bad as it was and I think the biggest contributing factor has been that I'm completely calm and accepting in regards to my pain. I know it's not going to be there forever and I don't let it worry me. Keeping my anxiety under control is probably my biggest issue.

I've reached a plateau of sorts now as I'm doing everything I can except for the trigger point manipulation. The closest place that I could go to for this (that I am aware of) is in Scotland, and that's still too far.

Here are some general observations as regards my situation:

-EsterC does help lessen discomfort. I don't take more than 1g a day or it gives me diarrhea.

-Vitamin B complex also seems to help me though I don't know why - it could be purely the placebo effect.

-Plenty of fibre helps. Constipation makes my pain worse.

-Hot weather effects me more negatively than cold weather.

-I barely did any stretching at all during 2004 but I had no major flares that year. I'm not sure why this is given that it was a contribution to my initial recovery.

-My flares seem to go in a distinct pattern. I get a major flare, then a series of smaller flares, then nothing for long periods of time, then the major flare again. etc. etc..

-Anxiety causes the majority of my pain. Example 1) I won't have any pain during the day, but it will come on as soon as I try and sleep. I believe this is because my mind is not occupied and I allow myself to worry, which causes tension. Though it may be something else. Example 2) If I'm experiencing other health issues my PM usually disappears. It only seems to surface when I'm feeling fine in all other respects.