Gay men with CPPS (Popburner's Case)

[popburner]

Yeah - It's interesting how different our symptoms are on this forum. I have hypersensitivity, but my symptoms are all better when I sit down or stand still - my symptoms are always much worse while moving - sounds like the opposite of yours...I also can't seem to find trigger points (nor can my pt) that refer to my actual pains/discomforts - I am really really really beat down with this at this point - I'm 3 months into the Stanford/Wise-Anderson Protocol and 4 months into PT with VERY little difference noticed...I really need a sign that this is going to work because I'm pretty darn near giving up on it all....

[webslave]

popburner, with your "burning hands" symptom, we advised you to see a neurologist, because you may have more than chronic prostatitis / chronic pelvic pain syndrome or something other than chronic prostatitis / chronic pelvic pain syndrome going on. Did you go?

[popburner]

After long talks with Dr. Wise, Dr. Smith (a urologist Dr. Wise uses), and my PT (liz Rummer) - I decided the issue was not really connected, and it has since disappeared completely - though all the chronic prostatitis / chronic pelvic pain syndrome symptoms are still present...thanks for the thought though - I'm pretty angry at the world right now - and trying to talk myself out of this anxiety because it's of course not helping.

[webslave]

Well, you're 29 and your chronic prostatitis / chronic pelvic pain syndrome started at 29. So it's early days. This is not something that goes away quickly for many men ... unlearning tension, anxious thinking, pelvic clenching etc takes some time, and clearly you are still beset by some of these furies.

[perth]

I just thought I'd support Webslave's point here. My symptoms are better after much relaxation, 10mg of Elavil (thanks Webslave) and time. I guess, also, the realization that this might not be 'cured' but I can live with it using the techniques learnt from Dr Wise and others. Of course I hope that time spent working at relaxing (I know, I know, a paradox) will pay off. I can promise you that I have had times with almost no symptoms. It just took a holiday, lots of relaxation and some fun - things that were hard to do when I first got this. Give it time. Healing will come slowly - after all it took ages to get it (let's say 11 years of adult life, and how many of them stressed and clenching?).

Give it time and fill the now with pleasant experiences and relaxation. Tomorrow can look after itself.

[popburner]

Thanks guys - I'm working on "surrendering" to this experience. In surrendering I don't mean giving up, but letting go of the fight (as Dr. Wise says relaxation is paradoxical) by accepting the reality of "right now." I do pray this will eventually subside completely (or even mostly), but to do that I need to stop struggling so hard against it. I've decided to just plug along at the SP and check in with myself again in March - that will be 6 months since going to Sebastopol - and see how I'm doing then...

Perth - in seeing some of your earlier posts it looks like we have some of the same symptoms. Did you ever find a trigger point for your penis tip pain? Tim Sawyer was also not really able to replicate my penis tip pain continually - I say "not really" because when I saw him I wasn't having this specific issue much, so we weren't really looking for it. I do have referral from that lower abdominal spot, but i'm not sure if it's coming from an abdominal trigger point or a very high up anterior levator ani spot that no one has reached. Any thoughts would be appreciated...
Thanks!

[perth]

I'm a bit the same with the trigger point stuff. I get referral from a lower abdominal trigger point - it's almost wedging fingers under my pubic bone and pressing on where I imagine my bladder is. That refers to my Levator ani and the tip of my penis. Internal ones hurt like hell quite often, but usually don't refer to that spot. I have had trigger work from Tim and a local expert and the local PTs work did help. My 2c worth on all this is that I think the muscles knotting in the pelvis reduces blood supply and you get a kind of "pins and needles"effect. I say this because the local PT works on muscles near my sphincter and it leaves the side of my penis, all the way to the tip, feeling like there's "new life"/blood getting there. The glans are less sensitive too. Also, I find that the glans are less sensitive when erect. I guess if you stayed erect for a few hours it might tell you something but it might scare my kids. So time without tension lets the blood back in. Blood makes it feel better by supplying all the good stuff. And eventually the starved nerves get to heal. But that last part may take time as years of starvation may leave the nerves damaged.

Anyway, that's my theory, and since there's no accepted explanation (or evidence that I can find) for what a trigger point is or how it refers pain, I'm sticking with it.

I hope that helps mate. I can promise you it will get better. Completely better? I dunno. But it's good enough for me to have a life I enjoy, sex, children, exercise and a drink or two.

[webslave]

When I was very symptomatic, I had a bladder ultrasound that combined a very fluid-distended bladder (had to drink a liter or two in prep for the U/S and felt I was going to burst!) and the hard pressing around the bladder of the ultrasound probe on my lower abdomen, which in turn shoved this bloated bladder into all the adjacent muscles.

Afterwards, for several days I was symptom free.

This phenomenon has been reported by quite a few men, almost as if the hydrodistension is therapeutic. It can be, because I believe it stretches deep pelvic muscles.

[Spasman]

This is my main symptom, I have suffered with this for over a year now. It is worse when I sit down than standing up.

I have also been told that it may be something to do with Pudendal nerve entrapment but this is quite rare and usually is linked to some sort of trauma to that area ie. surgery, accident etc

I have found a TP about 3-4 inches inside my rectum and up towards my perineum that replicates the pain.

Have you tried any internal work to locate the any TP's?

James

PT 3-4 inch inside also replicate my Tip burning and colo-rectal surgeon says"It's normal they share the same nerve(s)".

I'm still trying to understand tho.

I have not return to my PT yet.

[kevin]

Anyone with this symptom should get their pelvic floor and pudendal nerve checked out by a urologist. Some urologists prescribe EMLA cream for this. EMLA is a mixture of lidocaine and prilocaine that can be applied several times a day. Ask your urologist about this.

[superuse]

Thanks guys - I'm working on "surrendering" to this experience. In surrendering I don't mean giving up, but letting go of the fight (as Dr. Wise says relaxation is paradoxical) by accepting the reality of "right now." I do pray this will eventually subside Any thoughts would be appreciated...
Thanks!

You are far to early into this (less than 12 mo?) and on the right track very quick. Some of the physical therapy may be countered if you don't have the anxiety/catastrophe stuff under control.

Another big speedup to recovery may be if you were (before CPPS) and are doing weightlifting, cycling or running or perhaps heavy sports (basketball, tennis) dump it in favor of lighter walking/swimming for the foreseeable future. If those activities were and are now one's anxiety coping or self-worth mechanism continuing may be self defeating. Finding a book club/social org etc or some hobby that doesn't stress the pelvic floor may be helpful.

[virtual02]

This is also basically my only symptom. When sitting or standing still, everything is right. The only problem I have is when moving I feel pain in the glans and sometimes in the tip of the penis as it makes contact with my underwear. Relaxation seems to help, and stress or heavy exercise seems to make it worse.

Something I found very helpful to reduce the pain is wearing tight underwear or exercise shorts with the extra layer which reduce friction.

[kevin]

Another option is to wrap a bit of bandage or other dressing around your member.

[perth]

I found the tight underwear solution the best.

[popburner]

Ok, so I've searched through those exercise posts...and I'm having trouble figuring out how to approach this. In the last 7 months I've really decreased my workouts from 5 days a week, plus being a professional dancer, a bike riding commuter (no car here), plus being a personal trainer for cash. No I am doing --> just training others and a light gym workout of an elliptical 20min and LIGHT weight lifting (upper body only) 3 days a week. My PT believes that it's important to cut back, but also to train the body to release tensing after orgasm, stress, and even exercise. She has said to me isometric exercise of abdominals or ok (planks from yoga, etc), but not concentric (crunches, etc). I'm having a long long plateau of the Stanford/Wise-Anderson Protocol with no real changes. As someone who literally lives through his body, and is extremely kinesthetic, even this amount of physicality is driving me crazy and causing some serious depression. Do people who have long term experience have ways in which they've slowly reintegrated exercise and physicality in once they teach their bodies to relax? Our pelvic floors are supposed to be strong enough to support our bodies in action, but then they are not supposed to hold on and on and on...is it possible to truly remake their habits?

BTW - I just got back from a week off in NY (now I was walking around a bit), but had the worst flare since Sept...and I didn't work out AT ALL...and in fact, often after a 20 minute run on my treadmill I actually feel much BETTER. Any less than 20 minutes and it flares me UP?