Starting pelvic treatment after 4 and a half years

[JuanMilo]

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

This makes a lot of sense, although I'm not sure if that's what made me flare or if I did the internal work incorrectly or did too much of it.

When I felt really good from the treatment Gerard gave me, he didn't do as much to me as he wants me to do at home. He wants me to do the stretches, so that's two sets of 4, one set close to the entrance, one set deeper in, then 4 sets of 4 on the trigger points, 2 near the entrance, 2 further in. I only did half of the trigger point stuff but then after that is when I've had a proper flare for the first time ever, my symptoms are usually pretty stable unless I masturbate a lot, in which case I might have a couple of bad days.

But I'm still flaring now and it's been several days. I've decided to leave anymore treatment until Monday to let things settle down. But stupidly - and this is my downfall, I've ejaculated a couple of times and that's aggravated things too. Do you have any advice about getting through this flare, other than stopping ejaculating? I'm a bit cautious about the internal work now and feel like I have to go back to basics.

Also I know you're not some kind of agony aunt but I feel like I'm in a bit of a shit spot at the moment. Been asked out by a girl I've liked for a long time but I'm kind of putting it off. Last time I saw her I didn't have chronic fatigue and I was able to hide the fact I had CPPS, I was also still in decent shape. I feel like this sh*t has almost taken everything from me. I used to be in great shape, didn't look tired all the time etc. Id like to be with someone but I'm carrying some serious baggage in regards to my health atm.

I'm determined to carry on with this treatment but I don't want to aggravate my symptoms for the worse and then end up stopping altogether or something. I know I shouldn't have ejaculated during a flare but I felt like I should have been able to a couple of times over a few days. I always end up feeling guilty and kicking myself for making my symptoms worse, I think even usually outside of having a flare I can feel guilty at times because of how it affects my symptoms!

Anyway, sorry for the long message, I'm just in a bit of a crap place right now. The long and short of it is I'm wondering what's best to do to get out of this flare?

Thanks a lot.

[JuanMilo]

Also one last thing - when I'm lying down the pressure on my lower back seems to cause pain in my urethra at times.

[webslave]

If you get into a complete hole with CPPS, flaring to the point where you life is heavily affected, I'd suggest strong painkillers like Tramadol. Your MD will prescribe, and if not, go to another. Take for a couple of weeks only, and by then the flare may have settled. Rest, calmness, meditation, hot baths, etc etc -- do all the good stuff as well.

[JuanMilo]

If you get into a complete hole with CPPS, flaring to the point where you life is heavily affected, I'd suggest strong painkillers like Tramadol. Your MD will prescribe, and if not, go to another. Take for a couple of weeks only, and by then the flare may have settled. Rest, calmness, meditation, hot baths, etc etc -- do all the good stuff as well.

Think I figured out what caused the flare. I thought it was the internal trigger point work which I'd started the day before, but I'd also started taking sore throat pastilles with 3 essential oils. I totally stopped the physio and cut back a lot on masturbating, but the burning wouldn't go away. It did get a bit better though which was confusing. I was sleeping terribly though because of the burning and urgency. Anyway I looked up myrrh oil which is the main oil of the pastilles and it turns out it causes diarrhoea, which I'd been having on and off and I didn't know why.

I've had issues with a sore throat for quite a while and I kept taking these pastilles for 3 weeks. I took a load the day before I went to see Gerard again and as well as the usual burning I was up all night with bad stomach ache.

So I've stopped taking them and I left the physio out for a week as well. My urethra still feels sensitive but the kind of burning I've had has almost totally gone away. I started with the internal stretches again yesterday and I'll work up to adding the internal trigger point stuff slowly next week.

TL:dr - I think essential oils caused the flare and not physio. Feeling more positive again after 3 weeks of burning and urgency.

[webslave]

Lot's of weird things can cause flares. Working it all out, one has to be a detective sometimes.

[JuanMilo]

trigger-pts-therawand.jpg

Hi there! Just a quick follow up. It was the pastilles, I haven't had any of that sort of burning again.

And a follow up to my post about techniques/tools that are easier on the hands. I bought a pelviwand (a therawand) as recommended by my physio - it's much longer than the EZ magic wand I've been using and has a longer straight part to hold onto. Just got it today and I feel like it being longer, plus having a consistent straight part to grip will help me get more leverage and will be so much easier on my hands which is great.

I ended up finding the attached picture when I bought the therawand. What do you think of it? It says that 11 and 1 are responsible for my main symptoms. This would make sense as to why I get much, much more relief from my physio's work than my own (which is usually none for the most part tbh). My physio said not to bother with the anterior areas in my own as they can be quite sore. What do you think about this? Sorry for yet another long comment!

[webslave]

Some of their locations are guesswork, others taken from this forum and Dr Wise's book. Each person is a little different, but you'll soon work out where your own trigger points are. Just go slowly and be careful.

[JuanMilo]

Some of their locations are guesswork, others taken from this forum and Dr Wise's book. Each person is a little different, but you'll soon work out where your own trigger points are. Just go slowly and be careful.

I have to confess something - I’m a complete idiot. I’ve definitely had some habits over the years which have most likely led me down the path to CPPS, I try to resist the bad habits but I succumbed to them pretty badly the other night.

Even though I resist it for long periods of time, I’ve always had a bit of an addiction to cyber sex and the other day I found a girl who I ended up having a back and forth with pretty much all day (on and off) until the early hours of the morning. My symptoms haven’t been that bad recently and even though I’ve never really done anything like this since I was a teen, I ended up masturbating for hours.

Tbh I’m quite ashamed by this. I had some soreness whilst I was doing this but nothing alarming, then after I stopped my penis got quite swollen which took me by surprise as this has never happen before. I assume it was lymph and over the next few days the swelling basically went completely as I left myself alone, but my penis has been quite sore ever since and unsurprisingly it’s all a bit worrying. It’s coming up to 6 days and I have masturbated gently twice now in the past three days. I know I’m incredibly stupid for doing that but I don’t feel like I have the tools in place to stop myself when I get the urge. I don’t know if that sounds foolish. I’ve somehow managed to convince myself that It’s ok if I do it gently, but despite doing it gently, my penis has gone from feeling mostly better to fairly sore afterwards, leaving me kickin myself at how foolish I am.

I think I probably need an embarrassing trip to the doctor to make sure my sexual health is at stake here. I’m quite low at the moment. I probably sound like some kind of sex addict, but I don’t think my usual habits would be bad for a healthy man, however this recent ridiculous blowout has caused me some fairly worrying aggravation. The main thing I’m worried about is how sore my penis is nearly a week later despite my penis not really being swollen anymore, but my CPPS symptoms have been worse too from it all.

Do you have any words of advice or techniques to deal with these urges? I would be extremely grateful if so. I’m certain it’s vital I leave myself alone to let the inflammation go away. Sorry for the long message, I’m just worried really. I feel completely stupid to have even had to have written this post up to begin with, but I feel I’m on a self destructive path and it’s time I admitted it.

[webslave]

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.

[European]

Juan Milo, I know how you re feeling, I went through this vicious cycle many times. Post-ejaculatory pain is one of the most devastating impacts of this horrible condition. Webslave is right, there is no permanent damage, but the flare/ups might be long and tortuous.

Dont look back, try to stay calm and positive and the condition will somehow settle down. Try to add some new vitamin or supplementary into your regimen, although this step is more psychological than really curative. I am also pretty struggling last 2 months and this never-ending battle is taking its toll...but I am sure there are better days ahead of us.

[JuanMilo]

Thanks man. I do get pain after ejaculation but this latest thing well I’m not quite sure what I actually did to myself. I masturbated for far too long and my penis swelled up quite badly and took a few days to mostly get rid of the swelling, it wasn’t bruised, just more like a lot of fluid. I’ve seen other people complain about this on the internet who don’t have pelvic pain so it makes me wonder if it’s unrelated or whether it’s down to the act that blood flow and likely the flow of lymph is fucked up in my case. One of the main problems I’ve had is the veins on my penis being swollen and fairly sore and this has made it worse.

I haven’t been treating this illness for a while though. I got disheartened after seeing the pelvic pain physio several times and having no change after a fair bit of time, effort and money on my part. But I think I need to get going with it all again and perhaps explore things on my own to try and see if I can tailor a treatment plan for myself. I’ve ordered a Theracane and a book on myofascial release to hopefully gain a better understanding of how to treat myself. Do you treat yourself too?

[European]

I am having really hard time, last 2 months or so...Burning pain in my base of penis, groin, scrotum etc all day long. Really difficult to manage and I am afraid the neuropathic pain is now prevailing over muscular. I tried Lyrica 300mg daily, but after 5 weeks I stopped it. The result was foggy brain with burning pelvis..so I switched my regime to Amytriptyline and Atarax. Doing my PT stretches every day and once weekly my girlfriend is doing internal work. Once monthly visit at PT but I am also somehow disappointed. He helped me tremendously in the beginning but now its getting less effective. There must be some nasty trigger points either in anterior pubococcygeus or in adductor, which are responsible for my misery. And of course, neurogenic inflammation. Looking forward for July and August, two months of vacations for me. Right now life is pretty devastating...

[eltenso]

European, I am sorry to hear you are going through a rough path these days. I hope the coming months will be better!

As for me, I think I finally learned how to properly use the wand, and I could reach my trigger points in the superior portion of levator last Sunday. After that I had a couple of nights with less nocturia, which I optimistically attributed to my relative success in the "internal work". Now, after ejaculating yesterday I got terrible burning in urethra, the worst I have had in a long time. The pain and discomfort are now waning, after 24 hours, and I am little calmer.

I have been reading several posts in the forum, and found the one in which you mentioned having pins and needles in the scrotum. I have had that symptom since 2009, way before having urinary/urethral issues and coming to the realization that what I have is CPPS. Back then, my issue was mostly testicular and I attributed everything to my chronic epididymitis. Of course the urologists would have no idea of these symptoms, and others like hot/cold, or the feeling of burning skin stemming from the scrotum. Now I see these weird symptoms can all be explained by the trigger points in the anterior pelvic floor (as the other symptom I have always had: sciatica-like pain in my right leg). They are all paresthesias, right? Now, reading your post, I see you clearly distinguish neuropathic pain from muscular pain. Isn't both the same thing? How do you distinguish?

[European]

Thank you eltenso, I will answer in my thread, in order not to distract Juan Milo s thread.

[JuanMilo]

Thank you eltenso, I will answer in my thread, in order not to distract Juan Milo s thread.

That’s very considerate of you. Sorry to hear you’re suffering, but if any info comes my way about muscle groups to treat for your symptoms, or if I have some joy in treating myself I’ll update here and check in with you. Hope you have a breakthrough with this soon.