My story of woe

[Orion]

Hi,
I am a new member to this site, and am just starting to go through all the posts here to learn as much as I can.

I've been dealing with prostatitis, pain in my pelvis and general urinary problems for close to 12 years now...it all started when I was 18 and been a nightmare since then.

I don't have time now to write out my long story, so I'll just post the quick version.

My problems started at the age of 18. Since then I've been treated for infections, prostatitis, been scoped 5-6 times, been dilated once for a stricture and had two urethroplasty surgeries to fix strictures. My latest surgery went very well - but my symptoms persist. In fact I feel just as bad as I did before the stricture surgery. I had hoped that once the strictures were gone my problems would disappear ...sadly I was mistaken.

My symptoms include:

Pain in perineum
Pain in testicles
Shooting pain up down my legs, into my knees
Pain in my joints
Major discomfort during/after ejaculation
Frequency of peeing
Severe chronic fatigue
IBS

I don't know what to do anymore. I feel like I am at the end of my rope and am tired of complaining about this to my girlfriend. On the very infrequent day I don't have any problems, I feel like a real person. The pain, fatigue and problems are gone and I feel so different it's amazing.

My current uro has done a good job fixing my strictures, but discounts my other symptoms completely. My urine analysis/cultures are all perfectly clear. So I am on the hunt for someone else to help me.

Currently, the only thing I've found that can help me is Ibuprofen. But I've taken so much of it my stomach is starting to hurt and I've had to cut back.

I sit a lot in front of a computer working full time, and am in grad school (more sitting).

I have been treated for anxiety problems, and do not deal well with stress/anxiety

I travel a lot on the weekends (long distance relationship)

I am sceptical and tired of this problem and those promising fixes. I haven't given up hope yet, but feel like I've lost my youth to some sort of curse. Anyways, I'll start looking around and maybe find something that can help me.

[scotsman]

Welcome to the site

Sounds like the classic chronic prostatitis / chronic pelvic pain syndrome symptom list you've got there.

First steps are to read this forum as much as possible (FAQ and success stories sections especially) and buy yourself a copy of the third edition of 'A Headache in the Pelvis'. Buying and reading that book was a life saver for me (you can read my story via the link in my signature).

I'd also recommend buying the following 2 books as well:

The Relaxation & Stress Reduction Workbook by Martha Davis
The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief

The 'Headache in the Pelvis' book describes and shows stretches you can do as well.

Richard.

[Orion]

Thanks for the reply Scotsman, I have pretty much given up on a fix for this...but I will look into those books. I have heard a bit about the Headache book, but being skeptical, haven't purchased it. I will do so soon. Part of that skepticism is reading all the supposed fixes, drainage, infections, travelling to China/Phillipines etc.

I'd mostly like to find a competent person whom I could work with to help cure this malady. My quality of life is nil right now.

Do a lot of people with this chronic prostatitis / chronic pelvic pain syndrome have chronic fatigue? A general feeling of malaise? I think I've gotten so used to the pain that its just wearing me out. I have a high desire for sex but doing it makes things a lot worse. On the occasional that I have a "good" orgasm, which doesn't feel blocked/muted, my symptoms clear up. If I refrain from orgasm (sex/masturbation) symptoms get better, but then I get so horny I go crazy.

I worry that all the surgery I've had will make things worse. The stricture was caused by (I suspect) me falling on a bicycle bar as a kid and having a lot of blood in my underwear that night.
Orion

[Richie]

Orion:

Don't despair. I think we all reviewed the websites you spoke of. I can say that many people on this board have found relief but there is no magic pill. If you take the time to research the book suggested, do the stretches, etc. you will find relief. For me it took roughly two years of trial and error. You have the advantage of learning from all our mistakes so likely it will be faster.

Take the time to read the "best posts" section as well.

Good luck and stay positive. You are in the right place now.

[HelpADude]

I'm quite new to this symptoms and the "theory" on this site is the best one I found so far.. ties in all the related symptoms like IBS, IC, and chronic fatigue.

I start having IBS and "general sick feeling" whenever I get a flare. When I never EVER had IBS in my life before. Not a coincidence!!!

Surgery should be your VERY last option but that's in the past, focus on the advice offered above, you will get BETTER. I would also check out Dr. Sarno's books on TMS as well (check your local library first).

[CppsDad]

Orion, you could be my twin. Your symptoms are so close to mine, I thought I was reading my own story. The muted, painful orgasm. Stress/anxiety. Pain in testicles. Giving up hope. You name it, your story is my story.

My response is: Do what they say above. This site is where you should have been all along. Read my success story, and you'll see a lot of similarities. And then keep reading.

The best thing about your post is that you don't mention haven't yet tried the BEST treatment of all, the Stanford/Wise-Anderson Protocol. The best tool is still out there for you, and you can look forward to going on the road to recovery.

Mike

[Orion]

Thanks all for the feedback. I am reading and hopefully learning. At least there are others out there who are going through similar things I am. I worry that the stricture surgeries have really messed things up for me (I had my perineum cut open twice to place grafts around my scarred urethra) - but hopefully not

I am intrigued by the Stanford/Wise-Anderson Protocol, I'll need to read up on it. I find it difficult to "visualize" those muscles - and how they could be causing so many problems?! I try to relax my belly, but alas no miracle cure...

Thanks again for the support.

[CppsDad]

I am intrigued by the Stanford/Wise-Anderson Protocol, I'll need to read up on it. I find it difficult to "visualize" those muscles - and how they could be causing so many problems?! I try to relax my belly, but alas no miracle cure...

Nerves go everywhere. That's all there is to it. If I press on my abdomen, I can get pain in my rectum and penis. The pain just travels, and makes it hard to pin point.

For ejaculatory pain, check out the tranverse muscles in the perineum. One month working on these reduced by pain by 80%.