Starting pelvic treatment after 4 and a half years

[JuanMilo]

Thank you for the help and advice European. The fact you had 13 months with few symptoms is very encouraging. I’ve been doing the AHIP stretches since my last posts now. Much less aggravation from these stretches, although they take me longer to do (around 40 mins as opposed to 20). Not sure if I’m seeing any improvement yet, although my gut tells me there are some mild improvements with certain symptoms, like urinary pain and some sensations in the penis. I think I may be having better erections too. I have been ejaculating less though, so it could be that that’s helping. Nonetheless, I’ll continue with the stretches and I think I could do with starting some more stuff from the book as time goes on too.

Quick question - are the pelvic tilts from AHIP lifting your bum/coccyx upwards off the floor, or flattening the back so the coccyx is pressed to the floor?

[European]

If I am correctly interpreting your question, I would say lifting upwards. But I have never had substantial problems in coccyx area, almost all of my pain is in anterior pelvis. Now for the 3rd week whole pelvis is clenched like big fist. I can feel immense tightness like wearing trousers two numbers smaller than needed...
But there is also one good news, I managed to miraculously get an extraordinary appointment at my PT, on Friday 17th.July...After that I will see more about my status quo.

[JuanMilo]

Okay I'm here not to provide an update per se, but to document something that I think is very important for my journey.

I am in a flare today and that is because of my problematic sexual behaviours, I've realised I have several of them and I'm going to have do my best to break out of them. I also have problematic thought patterns in regards to sex.

So before this all started, before I got the infection or whatever from the girl I was seeing, I was worried I wasn't big enough in the old trouser department. To be honest, I fall well with average or even slightly above and I've never had any complaints, so I don't think I have anything to worry about. But my mindset has always been that I only really look big enough when I'm fully erect, which as you will all know you aren't all the time, even during sex. So what I would often do is tense up my pelvic floor muscles during masturbation and sex to really make myself as big as possibly could be. I also started to do kegels when I met the girl who this started with. I didn't do that a lot, but put that together with excessive tensing during sex/masturbation and psychological insecurities, I think a potential infection (I do think I had one in the very beginning as I was diagnosed with urethritis from tests at a clinic) and I think it was the absolute perfect storm for CPPS.

On top of this I've always been one to edge excessively while masturbating for a long time and I've been out of that habit since I started physio. Reading this back as I type, I can't help but feel stupid to be honest. Stupid to go that long at all and also stupid because I tense up quite a lot when I do this. Yesterday I went for several hours. The last time I did this is basically what made me realise I needed to stop and start physio ASAP. So I haven't done what I did yesterday for a matter of a couple of months, but I know I need to stop it completely. Even if or when I'm better that would be highly problematic.

I just want to kind of mark this down to really admit it tbh, I don't think my entire CPPS is due solely to that but I know it's playing a large role.

On a positive note, after that last night, I immediately did my stretches and I felt the acute pain ease. I woke up less symptomatic and I've stretched again today which has eased my symptoms further. I've definitely caused myself further pain and I had some catastrophic thinking, including googling the issues I have, which I haven't done for a long time. But I feel positive that the stretches have helped me and I feel I'm on the right path, despite the fact I feel I've temporarily set myself back.

[webslave]

I agree with you about this. I see edging mentioned more and more commonly as causational in CPPS, and I think it's a factor researchers are not aware of yet. Moreover, tensing up to the extreme (in your case to boost the size of your penis) is a recipe for disaster. You're on the right track here.

[European]

Juan Milo, I couldn't have written it better. This is exactly my experience. Edging was main culprit when my condition started and edging was main factor of this recent flare up (although there were other contributing elements). Main problem is that you don't feel increasing neuromuscular tension during edging, there is not kind of "red alert"...The hell breaks out after ejaculation, when thrashed and worn out muscles are forced beyond limit. In my case real flare up starts even two or three days after event. And then anxiety and catastrophic thinking do the rest. Our cases are similar beyond belief. And many others of course too.

[JuanMilo]

Thank you webslave, as always I’m incredibly grateful for your help and insights!

[JuanMilo]

Hi European, sorry to hear you’re suffering mate, it is a relief in a way to know that someone is in the same boat though.

I don’t know how much of my post lined up with your experience, but I think there’s probably more men than we know who are suffering with similar issues to the ones I’ve described - insecurities caused by societal pressures, the porn we watch etc I bet this has played a role in pelvic pain for a lot of men.

I also think back to when this all started and I was met with neglect by doctors because everything was ‘normal’. I remember feeling like I was in the twilight zone especially when I was shouted at by a doctor and refused a referral to a urologist. All that added stress and anxiety will have done no favours.

[JuanMilo]

Still in a pretty moderate flare from that behaviour on the weekend. The penis pain is slowly improving but I feel like like a heat in my perineum near to the anus. Trying to stay positive though, I’ve been doing the stretches twice a day, but not sure if that is a bit much... I’ve been following up on people’s posts here and seeing many say they are much improved so that’s good. I’m tempted to try Quercetin. I’m always hesitant about any supplements after having that drug reaction though.

I’ve been bothered about the idea webslave wrote to someone that ‘tantric’ sex practices can cause auto immune issues in relation to the genitourinary system. Saying that, I have had this behaviour before and my symptoms generally return to a baseline. I was doing a bit better after starting the A HEADACHE IN THE PELVIS stretches too. Quite frustrated with myself tbh, but doing my best to stay positive.

I’ll let you know how I progress. Hopefully I’ll have returned to a baseline by the time a week or so passes from the episode, I always do get back to the regular symptom set baseline after this behaviour, but I’ve never stretched through a flare like this before, which seems to be what’s playing a role in this flare being different to previous ones.

Also, as a side note, when I ejaculated that day, I had major tingling in the area I’m having the burning now, I’ve never had that in my life.

But yeah. I just wanted to update. Staying positive by seeing that people have improved given enough time.

[European]

Juan Milo, I think that during the flare-up (which in my case is sometimes 3-4 weeks) it is utmost important to get mental side of the problem into order. Heavily up-regulated nervous system makes the permanent release of the pelvis almost unthinkable (I am in that condition right now). So we must somehow find the way to our "normal" state (in my case this means being almost asymptomatic with some minor aches in groin or pelvis in general). The CNS is heavily magnifying the impulses from the pelvis right now. Then the regular stretching, walking, swimming etc. starts to play a role. I am also in hypervigilant state right know, doubting whether to stretch or not..and how many minutes etc etc. which makes me pretty vulnerable from anxiety point of view etc...Tomorrow I have a date at my PT (it is one and half hour driving so nothing comfortable right now) and then I leave for our weekendhouse, hope that this helps to end current nasty flare up...

[JuanMilo]

Hey European. I hope you’re feeling a bit more relaxed and I’ll check your thread to see how your appointment went. Hope you enjoy your break!

[JuanMilo]

Hi guys, I will admit that I’m pretty down and anxious today. But I came here to maybe ease my mind a bit and I will get on with my day after I’ve posted this.

I looked on Reddit for people talking about pelvic physio and I came across this talk by Jeanette Potts.

Clearly she advocates to treat the pelvic floor but it made me anxious to watch at as she said ‘PT is the new Cipro’ in that they’re prescribing it to men without real investigations. She then went and showed patients that had physical issues that could be shown on tests and that had apparently previously been missed by other uros, saying that physio wouldn’t have helped them.

That said, I have had an ultrasound of my bladder and testicles, no issue there. I had a CT scan (without contrast) and the uro said everything was normal in the urinary tract. The only two things I haven’t really had are the prostate massage and the cystoscopy. She said some do have infections (which I was surprised about) and she also found someone with bladder neck issues who’d even had several cystoscopies before. That said, surely the chances are I am normal due to the other tests not showing anything up.

Okay, I’m not going to spend any more of day in this frame of mind now, I just wanted to get my thoughts down and get a little bit of perspective.

Again, I’m massively grateful for people’s time and help. I had a bit of a realisation while I was writing this, that worrying about this stuff right now means I’m not actually committing to the pelvic treatment, so I need to stop in order to actually give the treatment a chance to work.

As a side note as well, I am still pissed off with myself for my problematic behaviours and I need a strategy to deal with them, as I feel I lack self control and that sets me back too, feeding the anxiety due to the pain I’ve caused myself.

[webslave]

Your chance of being misdiagnosed with CPPS when you actually have a massive infection or diverticulitis or bladder neck hyperplasia or a chondrosarcoma or some other problem is remote. I would not worry about that unless your symptoms are refractory (stubborn or intractable) to all treatments. Then keep investigating, if that's the case. It hardly ever is.

[JuanMilo]

Your chance of being misdiagnosed with CPPS when you actually have a massive infection or diverticulitis or bladder neck hyperplasia or a chondrosarcoma or some other problem is remote. I would not worry about that unless your symptoms are refractory (stubborn or intractable) to all treatments. Then keep investigating, if that's the case. It hardly ever is.

Thanks a lot webslave, I stopped focussing on that catastrophic thinking and have continued stretching/trying to relax. My symptoms have eased a bit but having moderate discomfort/pain in my penis, I’m confident this will continue to ease. I’ve definitely just basically aggravated the nerves in the area, rather stupidly so.

I’m thinking about starting supplements. I might try graminex as I’m concerned about there being a few ingredients in Quercetin. With the ME/CFS I find it’s good to start slowly with supplements, so one ingredient at a time might help.

I’m just wondering what the deal is with pollen extracts? I see they affect BPH, I don’t know it they have the same action as saw palmetto is supposed to? I’m concerned about that as I’ve seen some claiming that saw palmetto has a similar action to propecia, which seems to have caused CPPS, erectile dysfunction etc. Probably just over thinking things though.

[JuanMilo]

Bit of an update - In hindsight I think this self inflicted flare has actually come about in a sense because I was doing a bit better from regular stretching. I had slightly less discomfort in my penis and was definitely having stronger erections, which led me to become careless and go back to my old, problem behaviours. I do feel like this is a sign I’m in the right track though, but I’m a week and a half into a flare unlike any I’ve had before.

I’m keen to start exploring trigger points soon as reading A HEADACHE IN THE PELVIS they say they don’t think myofascial release alone is enough. I’m intimidated by doing the internal stuff without the guidance of a professional, so I may start with external work first. Feeling around, I found a spot in my abs that caused urinary urgency. I’m going to read up on trigger points and start working on the external ones.

I also may try to take advantage of the lockdown and contact the head honcho pelvic pain woman down in the south of England and see if she might give me a remote appointment to discuss internal work. I know she trained Gerard Greene who I previously saw and apparently works with athletes with pelvic pain.

I’ll keep the thread updated.

[JuanMilo]

Update -

Kept up with stretches/abstained and my pelvic floor/abs etc feel a lotttt better, but my penis is still very sensitive and sore. It’s the veins really, the blood vessels are sore. I’m not obsessing too much on this particular issue other than it is where the pain is felt. I’m extremely open to the idea that this is all caused by muscular and nerve issues, with some psychological stuff thrown in the mix too - CPPS basically!

So I’ll continue with the stretches as I do feel some benefit. My symptoms probably flare a bit immediately after doing them though. On top of that, I’ve ordered some graminex to try (possibly before trying Quercetin) and I’ve got back in touch with my old PT, Gerard Greene. I want to discuss internal massage and trigger point stuff with him and gain the confidence/knowledge to carry treatment out on myself.

This is a setback and I have felt dejected, but I’m putting a little plan in place here to hopefully get on the mend. The only success stories I see are of people approaching this from the tension etc point of view. I’ve had this for over 8 years now and I saw someone who recovered after 8 years with these techniques, so I’m determined to stick at it.