Starting pelvic treatment after 4 and a half years

[eltenso]

Thanks European.
I am sorry to have distracted Juan Milo's thread.

[JuanMilo]

Others may offer further advice, but you seem to understand what's happening pretty well already. Intense sexual activity WILL aggravate this condition. It's a neuromuscular certainty. No permanent damage, but a setback.

I went back to the doctor today to request a referral to my local pelvic pain specialist. What’s strange is that when I saw him last time (about 6 years ago) and I asked him about the Stanford/Wise-Anderson Protocol, he claimed the idea was ‘outdated’. But I’ve recently found a slideshow from a course he teaches on female pelvic pain and he’s talking all about myofascial release and internal/external trigger points, so I want to see him again. Should have an appointment booked in the next 2-3 weeks so I’ll keep this thread updated.

My penis has felt messed up since 2012 (the bulbous sore veins that appeared suddenly after infection in particular) and I feel at a loss. I need some direction with this treatment and although I’ve seen a couple of people who’ve helped show me what to do, I’ve had no breakthroughs. I can’t help but wonder if there’s something like a varicose vein or pelvic congestion affecting my penis. What’s strange is I can’t find many people complaining of his symptom, which is why I want to talk to the specialist again and see if this is in the realms of ‘normal’ CPPS.

[webslave]

Doppler ultrasound studies have shown that there is increased blood flow, probably due to the effects of inflammation, in men with CP/CPPS. http://pubmed.ncbi.nlm.nih.gov/10737481

FWIW, I had clearly visible, purple veins in my perineum when I was very symptomatic. Long since gone. I see venous congestion as an artefact of the inflammation, a side-effect, not a cause.

[JuanMilo]

Hello again, I wanted to give a quick update on my thread. I saw the pelvic pain specialist who indeed does now recommend physiotherapy and was working with a pelvic physio when I saw him. She examined me internally and said she didn’t really find any internal trigger points, similar to the person I saw in Birmingham (but he did find something between 11-1 o clock - something to work on perhaps?).

She gave me stretches to do whilst doing deep belly breathing to relax the pelvic muscles, stretch names are: knee to chest, knee to opposite shoulder, foot and knee up, knee over to hand, child pose, flat frog and happy baby. Also I stretch my abs by leaning backwards over an exercise ball. I do this because I’m sure I’m abs are involved - sit ups send my symptoms through the roof.

I’ve been doing these once daily for about a month and I feel for the most part like I’m in a flare due to the stretches with more discomfort in general and more likely to have burning after ejaculation, but I’ve had a couple of moments that have encouraged me. Feeling almost normal when urinating a couple of times, the appearance of things down there being less ‘aggravated’ after stretching, one time of having almost no feeling of ‘fullness’ in the groin and penis during sexual activity once recently.

I’m going to continue on this path and add the other elements the physio gave me, like pelvic tilts and massaging my abs.

One of the success stories said he was in pain for 6 months from stretches and then he felt better. I’m hoping the flare is a good sign. I’m determined to get better, but need to keep at it and add a couple of things to my pelvic pain repertoire. Hopefully I can get on top of this

[European]

There is always a huge element of inertia whatever you are doing when in CPPS. If I have a flare-up, and start to make my stretches dilligently every day, I know that there are still a lot of painful days ahead of me. And then one day I wake up and know it is getting significantly better, within a few days...This inertia is typical also for worsening periods, I can eat unhealthily for many days and neglect the physio without any worsening...and then out of the blue - a flare up...this is a hallmark of CPPS.

[JuanMilo]

Thanks for the response European - out of interest, what stretches do you do? *edit* I just read your post where you said you do the stretches from a headache in the pelvis! I’ve been given different stretches from the person I saw, I'm wondering if I should switch to those...

[JuanMilo]

Wondering if I can ask for some advice that's okay. So for the first time ever with this condition I've been consistently doing stretches (daily for about a month I'd say) and I'm flaring. I'm now having burning after every ejaculation which is very unusual for me, it had become a ‘now and then' thing. I've reduced sexual activity a little bit but I don't think it's necessarily that. The stretches I've been given aren't the ones in a Headache in the Pelvis, but they're from a pelvic pain physio. They include some squatting type stretches. The flare only seems to be intensifying the more I stretch. I have sensitivity in my urethra all the time. Another thing is that I've been told to breathe deeply into my belly while I do the stretches. I'm not sure if that's a bit intense, or if I'm breathing too deeply.

I'm hopeful for improvement despite it being a long time, just concerned about this flare now. Would be extremely grateful for any advice.

[webslave]

Squats of any kind are notorious for causing problems. I would stick to the Wise book stretches.

Also remember that when you start treating trigger points, they can actually get worse before getting better.

[JuanMilo]

Okay, thank you very much webslave. I think I’ll switch to the headache in the pelvis stretches. Should I be doing belly breathing while I do them as the physio instructed? I’m wondering if the breathing is too intense and puts more pressure on.

So actual squats were part of the routine the physio gave me, but because I have plantar fasciitis in my foot (yer another bloody issue) she told me to avoid them. I do a yoga pose called ‘happy baby’though and I’m wondering if that’s similar to the squats.

happybaby.png

I’m determined to get better now even if it does mean temporary pain. I just don’t want to make things worse. I’ve wallowed basically for my entire 20s and I want to claim my life back now.

[webslave]

Happy Baby should not cause problems unless you are straining against the hands. Most likely you are getting the typical flare that happens when trigger points are 'disturbed'. The breathing will not make it worse, only help.

Just start off more slowly to avoid big flares.

[JuanMilo]

Okay I started off the headache in a pelvis stretches last night, which seem less intense than the ones I was given. I didn’t do them all three times as it said, just the once to make sure I’m starting slow. I’ll build that up a bit I think. Also I left out the squatting against the wall.

Do you think it’s wise to leave out the happy baby if I feel that’s the one possibly causing the issue? I was doing child’s pose too and I did have some penis pain while doing it recently. I’m wondering though if that means I should be focusing on them, not neglecting them?

Sorry for all the questions - that’ll be my last while I get on with this next step

[webslave]

Don't leave stretches out unless you are convinced that they are causing problems. Rather do them once instead of three times as you suggest. I know you are keen to recover, but it's better to start slow and build up. Slowly slowly catchee monkey as the saying goes. This is a marathon, not a sprint.

[European]

Squats - even in modified or "light" version were always quite suspicious/dangerous for me. Sometimes I felt everything is ok, sometimes I felt that they aggravate my condition, making a pressure on pudendal nerve etc. Now I would say that the battery of stretches in AHIP is versatile enough even without squats. I would skip them.

[JuanMilo]

Thank you guys! So European I was wondering, do you have any thoughts on the headache in the pelvis book saying to do the stretches for less than 30 seconds? I always thought you needed 30 seconds to stretch a muscle. Also, how are you doing these days?

[European]

I also tried to keep this 30 seconds as a reasonable limit for almost all the stretches but there might be occasional situations suitable for shorter duration. I was always doing the set of stretches in AHIP with the exception of squats. I feel that my right pudendal nerve is somehow constricted/inflamed and I have to be very careful. Right now I have another flare up, quite nasty but I was 13 months almost fully asymptomatic which is my longest period since the start of this horrible condition. More to come in my thread.