Starting pelvic treatment after 4 and a half years

[webslave]

Did you recover from CFS too then?

Yes, but if I really exert myself, such as working physically all day in the garden, I sometimes have a feeling of exhaustion the next day, which is a faint echo of what I felt when I had full blown CFS. So it has gone away 98% of the time, and only comes back mildly, on rare occasions, for a day or so.

[scotcan]

Just a lot of the stretches and relaxation techniques. Also the abdominal trigger point therapy and foam roller (Although I did get some new ways to use it). Working with the physio ball is new to me, but looks like you could get lots of benefits from it.

I'm not sure about how her program recommends doing kegels once you have learned to relax the pelvic floor muscles, I think I will give that part of it a miss for now although she claims it's a big part in the recovery process

[JuanMilo]

Webslave, glad to hear you've also recovered from the CFS, did you employ any techniques to get better or was it just time that did it for you? I'm currently attending a fatigue clinic. I honestly can't picture what life would be like without these conditions now. 5 years of pelvic pain and 3 years of fatigue seems like forever, I'm only 26.

Just a lot of the stretches and relaxation techniques.

Well it looks like the stretches are aggravating my symptoms now. Not sure if it's just from overdoing it one day. I find that many of the stretches recommended to us sufferers cause burning around my pubic bone which is a symptom I don't usually have. The first time I did the stretches in 'healing pelvic pain' by Amy Stein, I had severe burning in symmetrical vertical lines at either side of my pubic bone. The massage my previous therapist caused a similar sort of pain. This time I seem to be getting burning in my urethra too. Although the muscles I use when you Kegel seem to feel a bit freer in some ways.

It seems that there's a puzzle to solve, and unlike most of these books seems to suggest, stretching isn't the first piece for me.

But it's hard to know. Perhaps I overdid it? Either way I'm going to back off on the stretching for a couple of days. Maybe I should skip to the trigger point part?

[scotcan]

Don't give up on the stretches or looking for trigger points, both are a very big part in dealing/beating this!

I also get pain from stretching and burning in the muscles, this is probably because we haven't really worked those muscles for a while and as we stretch and build them stronger you will create stronger fibres that will cause discomfort.

I can only speak for myself but when I first had this I had one real symptom, once I got on a program I got more, due to working/stretching the muscles. Things got worse before they got better, but gradually the symptoms disappeared one by one. It's the same this time. Keep thinking positive, you'll beat this.

[JuanMilo]

Don't give up on the stretches or looking for trigger points, both are a very big part in dealing/beating this!

Thanks a lot for the encouragement, really appreciate it!

So how are your symptoms now?

[webslave]

Webslave, glad to hear you've also recovered from the CFS, did you employ any techniques to get better or was it just time that did it for you?

Time, and the exclusion of gluten (YMMV):
https://ucpps.men/glute ... itis-CPPS/

Well it looks like the stretches are aggravating my symptoms now.

Not unusual. Anything that disturbs the trigger points can provoke a flare (e.g. stretches, trigger point massage).

[JuanMilo]

Very interesting about gluten. This really is a very complicated mess!

So you think I should stick with these same stretches? I was thinking about maybe doing them every other day or something. I get the impression my muscles are pretty wound up and that I should maybe ease myself into this routine.

To be fair today is one of the first times I've had total confidence that pelvic tension is the root cause of this issue for me. I know that might sound bizarre, but as you know I've had my doubts about infection and other issues. But since I've started doing these stretches I've felt changes for both better and worse. I've had this burning pain as I've told you, but the muscles that are involved in kegelling have felt strikingly normal for the first time since this condition started 5 years ago. I'm not saying I'm regularly performing kegels, but during masturbation the involuntarily contraction of those muscles has barely brought about any pain. I know that contraction is something I need to work on minimising, but regardless I feel like I've had a window into some sense of normality for the first time in years, since that type of contraction would always cause me pain in the past.

There's still all kinds of pain but I can tell that my condition is definitely affected by this treatment now and it gives me confidence for going ahead :)

I think, looking back I can see where this might have originated from. I used to be pretty obsessive (and insecure) about trying to please the girls I was with and before this came about I was performing Kegel exercises for stronger erections, I was also kegelling during sex and when I masturbated. I think that when I caught that infection, with the further contractions I had against pain while urinating etc, caused my pelvic muscles to reach some kind of limit and they basically rapidly begun to lock up, causing the cascade of symptoms I've had. Including the discoloured penis, very prominent/sore veins and a little bit of the controversial 'hard flaccid' issue.

Anyway, sorry for the long post but I feel like I'm at a poignant part of my journey. I'm sure it's still a long, tough road ahead though.

[webslave]

Stay with the stretches, at a pace that does not cause too many problems.

[JuanMilo]

An update for everyone:

I've started seeing Gerrard Greene in Birmingham. He charges less than half of Karl's appointment fee, and with him being much closer to me, including travel, it costs me about a third of the cost to see him compared to Karl.

He's been/being tutored by Ruth Jones who I think has an affiliation with the Football Association over here (which is quite a big deal), they both seem to treat a lot of sports people including professional players. Gerrard's also registered on the health and care professions council. Basically, with all due respect to Karl, I feel much more confident in Gerrard's credentials.

After seeing him twice he's recommended brisk walking, meditation, abdominal breathing, reverse kegels, abdominal massage with trigger point therapy and internal stretching of the pelvic muscles with a wand. He performed an internal exam today along with stretches at the 3, 9, 5 and 7 o clock positions, which is what he wants me to do at home, every other day after abdominal breathing, kegels and massage.

I'm going to see him again in a month and then we should be moving onto internal trigger points, I don't think he wants to pile too much on me at once and everything's fairly tender internally.

I'll keep this thread up to date - hoping to report back with some improvement!

[JuanMilo]

Stay with the stretches, at a pace that does not cause too many problems.

Hi Webslave, I don't know if you saw my last comment but I thought I'd give another update and also ask your opinion on something.

So for the most part, 2-3 times a week I've been doing the internal stretches with the wand for about a three weeks/a month now. I wouldn't say my symptoms have improved overall, but for some reason after one of my self treatments my symptoms were a lot better. Not too sure why. Gerard says it's encouraging to have any kind of breakthrough though.

I went to see Gerard last week and he performed some external and internal trigger point therapy and that evening my pain symptoms were minimal. The night before I'd had terrible burning from ejaculation too and the discomfort had carried on into the next day, so I was quite surprised to feel almost normal, albeit briefly the evening after Gerard treated me.

The thing is I don't really know how to treat these trigger points myself. I like Gerard and I'm gaining confidence in these techniques but he can kind of just do the treatment and not fully explain how to do some of the techniques.

I suppose my questions are - what do you think about these internal stretches with the wand, and how encouraging do you think it is that even though my general symptoms aren't much better atm, I've reacted positively to some of the treatments?

I'm going to have to read up about treating the trigger points because right now I feel a bit clueless.

[webslave]

If you can afford treatment and you have access to someone who knows how to do them, you're lucky.

The other option is to visit the Wise Anderson clinic and get trained in how to do them yourself.

Failing all that, it's a hit-and-miss, careful as you go, self exploration with an appropriate tool.

Your positive reactions to some treatments tells you that you're on the right track, so it's empowering, reassuring and calming (or should be).

[JuanMilo]

Thanks for your response. I can afford treatment for now, but my income will soon be very limited due to chronic fatigue syndrome. I also have to travel quite far to see Gerard and it takes it out of me, so my ultimate goal is to be able to treat myself. I can only really afford to see Gerard about once a month and that can't last forever unfortunately. Obviously he's a trained professional, but the relief I get from his treatment is stark compared to how I feel after self treatment. Gerard is equipping me with the skills to eventually be able to treat this all myself though, but it's early days,

Thank you for your reassurance. I really need it. I still find all of this confusing and quite crazy that muscles are to blame for the hell I've experienced.

Thanks for your ongoing help. I may need to ask about treating internal trigger points in the near future, but I'll try my best to research that myself for the time being. Thanks a lot!

[webslave]

I still find all of this confusing and quite crazy that muscles are to blame for the hell I've experienced.

Careful, it's not only muscles! This is a psychoneuromuscular condition.

[JuanMilo]

I still find all of this confusing and quite crazy that muscles are to blame for the hell I've experienced.

Careful, it's not only muscles! This is a psychoneuromuscular condition.

I'll bear that in mind. I usually don't come back so soon but I'm having some horrendous burning/penis pain, the type of which I haven't had before, except for maybe at the beginning of all this.

I did the trigger point therapy on myself for the first time the other day, where after doing the internal stretches, I use the larger rounded end internally and press for around a minute each time at 3, 9, 5 and 7 o clock, first of all near the entrance of the rectum and then further in. Gerard wants me to do two sets but I only did one since it was the first time I did it on myself. He also wanted me to apply much more pressure to the abdominal trigger points and I treated one very close to the prostate (perhaps I was putting pressure on the prostate and I didn't know?) with a fair degree of pressure. But to be fair I've done that once before the session that I did internal treatment.

It's two days after that session but I've never had pain this bad except for maybe at the very beginning. Aside from post ejaculation pain that I have to wait out, my pain is almost always minimal and very manageable, Pain of this type (an acute attack of burning and penis pain) is usually caused by ejaculation, never urination, ever. But this time a very severe attack has been started off just from urinating. It's fading off now, about an hour since I urinated and this 'attack' was brought on. 'But my urethra and peni tip are still in discomfort.

I'm quite worried at this point that I did something incorrectly during the self treatment. I'm concentrating my effort on not tending up against the pain at all though. The thing is, after the last treatment from Gerard which included trigger point therapy I felt really great, so I don't know why I should now have the worst pain I've had for years by far. I think I must have done something wrong.

[webslave]

I'm not in favor of using lots of pressure in the prostate area.

Some of my very worst flares were after a MD pressed hard on my prostate. If you press hard there, you could be doing two things:

1. Giving the trigger points in the anterior levator ani a huge wake-up call, and/or
2. Causing tiny breaks in the interior of the prostate, thus releasing "forbidden" antigens into the prostate from the seminal fluid and causing an immune reaction

I'm not sure how realistic point (2) is, but it's why I advise caution in this area