Starting pelvic treatment after 4 and a half years

[European]

I am almost sure that your case is (similarly to mine) psycho-neuro-muscular. No need to explore some improbable culprits related to bladder neck, occult bacteria etc. I can clearly see the psychosomatic aspects - this underlying anxiety taking always another masquerade (what if...). I am doing substantially better after visit of my PT, though I am not out of the woods. My last experience is that you can never fully prepare for flare up. It always takes its toll. But overcoming a flare up will always make you stronger. More in my thread to come. Keeping the fingers crossed for you,buddy.

[JuanMilo]

So glad to hear you’re doing better man. And I think you’re right, I do think we have a lot of similarities. I just want to get on the trigger point stuff now so I can hopefully start to improve my situation.

Honestly, and sorry for the TMI, I’m still struggling with masturbation. I left myself alone for a week, but my sex drive is quite high. I’m going to abstain again... I need to find that ‘Goldilocks’ level. After a week of abstaining I end up overdoing it again. I don’t think this is THE cause behind the CPPS but I think it’s all part of the self reinforcing cycle tbh.

BTW, I think I read that you said you had issues with your veins too, have they improved with treatment?

[European]

Yes I have enlarged dorsal vein on the penis and that was my first symptom back in 2009. After prolonged sex/masturbation with heavy clenching and kegeling (I did not know anything about it at that time), day or two later, a prominent new vein on my penis appeared. There was also a pain in my perineum and groin, feeling like having a clot behind my penis. I googled out that there is a so called Mondor syndrome, kind of thrombosis of penile vein. I was scared to death, went to urologist and told him I have probably this thrombosis. He said it is complete nonsense, made US and all the other exams... Said prostatitis and prescribed Cipro, etc.. This is how my journey began. Then the pain disappeared for several months and I was completely asymptomatic but this vein stayed enlarged. This pain came again after ejaculation with heavy edging etc. And then my condition somehow became chronic. I started PT maybe 3 years after the initial onset and it delivered improvement. My pelvis was never completely the same but I had many months with only minor aches and discomforts. But flare up could always come out of the blue, lasts 3-4 weeks and is as devastating as the first time...

[JuanMilo]

It’s interesting because it’s rare to hear from people with these vein symptoms. Usually it’s like they might have spider veins at worst. I find a lot of the discomfort is in the vessels getting sore tbh, that’s not all of my pain though, just one symptom. So when you were asymptomatic, did that temporarily go away, or did it just not bother you?

[European]

The vein never diminished back, but I was totally asymptomatic for lets say 6 months, no pain, no urinary issues and urologist said that this enlarged vein is completely normal so I did not investigate the underlying reason.. I was completely normal, even no post-ejaculatory pain but felt that my pelvis was somehow "fragile" or "shaken" or how to say it.. And then one day after delayed ejaculation the CPPS hell broke out... Quite intensive neuromuscular pain... If I only knew I would start PT immediately after first incident, because I think that even in that early time my pelvis was full of trigger points.. And you can imagine the psychic havoc I had within... ("its all probably only in your head" etc.). First 2 or 3 years were the most devastating... Now I have more balanced whole picture of my CPPS and I know that I am able to be almost asymptomatic for months though probably never fully cured.

[JuanMilo]

For me how it started was after a month or so of pain following a potential infection diagnosed as non-specific urethritis. I went to the toilet and my dorsal vein was curved at the bottom and not sitting in the centre of my penis as it used to. Small spider veins broke out and these became much larger vessels as time went. The veins all became linked by other veins quite quickly over the space of about two weeks. Everything kind of stabilised with my penis being much veinier than it ever was. The most drastic part of this process happened over about two weeks, starting after my pain began. I know people have said this is some symptom of being hyper vigilant or body dysmorphia, but this happened before my eyes in a short space of time. I don’t even think it’s that implausible CPPS is linked to this symptom, people get spider veins from CPPS, evidence shows the veinous system is more congested etc.

I had a uro say he could see what I meant about the veins and that must mean my system is ‘backed up’ somehow. He said he thought it was unrelated to prostatitis as the literature doesn’t link the pain and the vein symptoms. He wanted to give me a cystoscopy and prostate massage to see what was going on, but I never had it done. Other uros just said the veins were normal. Great if they are normal, but they do hurt. The pelvic pain specialist I see (Winston De Mello) said he sees guys with enlarged veins quite frequently and he’s been doing it for a while. I did ask his physio and she was a bit puzzled by it, but chalked it up to ‘fight or flight’ response when the body guards an area/organ.

Gerard Greene the physio I saw said he sees guys with these prominent vein issues and that they go away with pelvic treatment. I don’t see how such radical changes could disappear. But tbh, I’m not preoccupied about the way it looks or getting rid of the symptom per se (every girl who’s seen actually likes it haha), just the fact the changes along side pain indicate something isn’t right. I want to fully explore the pelvic pain route and see what happens here. I’ve seen the ‘hard flaccid’ crowd complaining of the same symptom and saw that one guy had greatly improved with PT. Like webslave said, we are our own detectives and I want to get to the bottom of this and see if I can get my pain under control.

[European]

It is almost sure that this suddenly enlarged vein has some link to all of our CPPS problems. I interpret that as a kind of pelvic congestion - edging a multiple ejaculation led to "lockdown" of our pelvis. I dimly remember that the onset of my problems was centered to two symptoms:that enlarged vein (I initially assumed that this is the center of pain) and completely new painful feeling "inside" the pelvis, maybe an inch "behind" the penis. Like big clamp from inside.. Dull though pretty intensive pain magnified by anxiety. The pain was worst when I was not moving, I got the feeling that during walking it was better... After 2 weeks it resolved spontaneously but this enlarged vein remained.. The rest you know... After series of sex/mast the condition became chronic.

[JuanMilo]

I’m on the same page European. On top of the pelvic lock down there probably are issues like fight or flight response and regional pain syndrome like webslave pointed out, which changes the appearance of the area. Hopefully significant rehab of the muscles, nerves and retraining of the anxiety response should be the answer.

As an update, I contacted both Gerard Greene (the physio I previously saw) and tried to get in touch with Ruth Jones who trained Gerard. She was the ‘head honcho’ physio I was referring to - really well renowned, had treated pro football and rugby players, had given lectures all over the world and trained a lot of people - and I was hoping to talk to her. I spoke to the receptionist at her old place of work who turned out to be a personal friend. I won’t go too into detail about the conversation, but she has had to retire due to illness and almost certainly won’t be returning to work. Needless to say, this is terrible for her personally, as well as her family and friends, but by the sounds of it also a massive loss for the pelvic pain community, especially in the UK where treatment for this condition is really sparse.

So just to sum up in case someone finds this in through the search function, Ruth Jones has had to retire early due to ill health and her former colleagues are referring people to Gerard Greene for help and advice.

[European]

Juan Milo I have read that you visitied also Karl M. What was you impression? From his videos and interviews I got the feeling that he perfectly knows the essence of neuromuscular CPPS... But maybe he is not so excellent in practical body work, internal triggers points eradication etc.. What do you think?

[JuanMilo]

Honestly I wasn’t impressed with Karl Monahan. I don’t know where he’s based now, but he was on a very expensive street in London and his appointments costed hundreds of pounds due to that. It cost a lot of money to see him and I left him with only minor interventions (belly breathing and some trademarked style of massage to do to myself on my abdomen, which looked pretty gimicky when I researched it), no plan to build up to anything on my own. It felt a bit piecemeal, if that’s the right word - like he could have sent me off with much more info and more of a self treatment plan in light of the fact he knew I was spending hundreds and hundreds to see him. In the end, his parting piece of advice after the second appointment was to rub my anus in the bath. I felt completely dejected after that appointment and over £1000 sunk into seeing him including travel. The location wasn’t great either, there were people outside the door for one of the appointments, so I felt I had to talk quietly to avoid embarrassment, which wasn’t good.

Maybe these last criticisms are unfair but he also felt too ‘smiley’ like I was almost being pressured into smiling back, like a false optimism and positivity, which I didn’t like. On top of that, after the internal exam he was saying things like ‘when I was inside you’. Coupled with the kind of eerie smiley-ness I just got vibes I didn’t like. But like I said, maybe that’s unfair of me.

I’ve since heard - and this is only through the grapevine for me so take it with a pinch of salt - that he isn’t advocating for treating trigger points anymore. Obviously the Wise-Anderson protocol says we need to treat trigger points, so that could be a potential red flag.

That said, other pelvic pain organisations seem to endorse him. When I had my NHS pelvic pain appointment, I told the physio about Karl and she didn’t know of him. Then she opened up a page for some Australian pelvic pain society to show me some stretches and he was on the front page. So yeah, gut feeling about Karl is that he isn’t the real deal but maybe I’m wrong.

[JuanMilo]

Okay so I’m still flaring quite badly at the moment, which is very unusual, even considering the edging or that I get mild flares from doing PT. The veins on my penis are noticeably aggravated/sorer and my urethra is quite irritated. By chance I saw someone online claim that soy can affect symptoms, so I searched this forum and noticed that someone said soy affects mast cells. It just so happens I’ve been vegetarian for about three weeks and I’ve been eating a lot of soy.

It’s unusual for anything to greatly affect this condition for me. I did once have a flare caused by essential oils in sore throat pastilles I was having daily which subsided after I stopped them. Nothing like this has happened before though! I feel broken tbh :/ I’m going to give up the soy and see if it makes a difference. I never thought I’d be desperate to get back to my baseline level of symptoms, but I really am.

Also, I have graminex on the way in the post and I’ve arranged a zoom call with Gerard Greene to discuss my symptoms and hopefully learn a bit about internal massage/trigger points.

[webslave]

Soy also has a hormonal aspect that affects some men. It's also a major allergen. I suggest stopping it for a month or so.

[European]

Soy is reported as highly irritating in many conditions. I have read in another forum that some women suffering PGAD (which is a horrible affliction) reported worsening after soy intake. So definitely skip the soy. I am also flaring a bit but this very good week immediately after PT gives me a hope. Good PT is essential.

[European]

Juan Milo there is one more of my ideas regarding veins:I checked my old exams from the times when my condition started and there was one interesting issue. I was at Dr. Bodner in Austria, one of the best interventional radiologists in Europe, specialising on pelvis. He is really go to guy with excellent knowledge. He investigated my distal pudendal (dorsal) penile nerve with highest resolution ultrasound (even I was able to see the nerve) and said that on the right side (my problematic) there are signs of "pelvic congestion" by pelvic veins and varices. Definitely different that in the left side which appeared normal. These whole bunch of veins is often irritated either mechanically (sex, long sitting in tight trousers) or by stress and clenched muscles. If the situation is positive they stay calm. It would make sense why some stretches of my PT (hip opener,massage of groin etc.) often delivered improvement (more space there). Enlarged dorsal vein (especially suddenly enlarged within short time) might support this hypothesis that some troublesome veins are also inside the pelvis. This does not oppose the AHIP assertion that "clenched pelvis creates inhospitable environment for pelvic muscles, nerves and other structures".

[JuanMilo]

Hi guys. Thank you so much for the input and info, I really appreciate it. A few days off soy and the pain is considerably improved. Makes me wonder how many other culprits there could be in the diet and environment playing a role in this condition.

European - I agree, I think pelvic floor dysfunction could definitely cause or play a very large role in the vein issues. I feel like the external symptoms are definitely indicative of what’s going on inside. Thank you very much for the info you shared on that.

Due to this potential issue I’ve been having with soy, I’m wondering now - I’ve received my graminex in the post and I’m just concerned about starting it. I know they think it may have anti-androgen effects. I’m just debating whether to use it or not. Anyone have any thoughts? It’s quite similar to the pollen in Quercetin, isn’t it?