UCPPS - Prostatitis, Interstitial Cystitis Forum

Pollen extract can irritate some people. Wait until you are back to normal before trying anything new.

Thanks Webslave, as always I really appreciate the advice.

Bit of a plot twist here - I just spoke with David Wise on the phone. He said the vein symptom is one of the most common they see and thinks I’m a great candidate for their clinic. They may be doing an online clinic due to covid, but the course isn’t cheap at just over $3000 dollars. He’s confident I can get better.

What do you guys think?

As a side note, he said there may be people in the UK that are decent but no one he knows of to recommend. He’s also very cynical about supplements and doesn’t recommend them. He said it’s all about calming the nervous system and nothing to do with inflammation in prostate.

I tend to agree with him in all assertions. Supplements are very very minor part of improvement in my opinion. I was taking any accredited quercetin product very long time with minimal or no effect. Veins are probably common, they are seldom the central issue. Calming the nerve system - this is probably the most difficult thing we can see how many times we flared under stress condition, anticipatory anxiety etc. no matter how many times I read about the importance of being calm and coping with stressful events... Many times it is not major life threatening stress like being a soldier in combat... For me they are some typical "ordinary stresses" like:
Long driving in my car with friends who are fully healthy and dont have any pelvic issues... or being a chairman of long committee session sitting for 5-6 hours in my work and not being able to withdraw because I am a chairman... You probably know similar situations...

JuanMilo wrote: Mon Aug 03, 2020 7:59 pm They may be doing an online clinic due to covid, but the course isn’t cheap at just over $3000 dollars. He’s confident I can get better. What do you guys think?

That's cheap by US standards for a week of treatment and personalised guidance.

David has never believed that the prostate itself is affected, but as I have shown, using various studies, if the nerves in the pelvis are overstimulated and "sick" (to put it in simple terms), they can cause inflammation near the nerve endings in the prostate and/or bladder. That's been shown in animal models.

As to European not being helped by Quercetin: only about 70% of men with CPPS are helped by quercetin and/or cernilton. It's all about your genes. Quercetin was a big help to me, back in the day.

Hi guys, as always thank you very much for the input on my thread. I’m waiting until most of this flare has gone away and then I think I’ll try the pollen in a small dose.

As another slight plot twist, I ended up talking to Tim Sawyer yesterday! He gave me a lot of time on the phone, which was great of him. We talked about all sorts, obviously mainly CPPS and related topics, but also music too, as it turns out we’re both musicians.

So I’ll try to summarise what we talked about as best as I can, hopefully I don’t misrepresent his points of view. Obviously I’m a layman, but it was very interesting to talk to him.

He said my story was classic and that he’d ‘only heard it a thousand times’. That included the vein issue I’ve been describing - I asked that if I improve with the WA methods, what can expect to see in regards to that symptom - to which his answer was that when things become desensitised from pain due to treatment then I won’t be so preoccupied with how things ‘should’ be/look. So I get that, it makes a lot of sense - I think that aspect of letting go is an important part of all of our journeys with CPPS.

He gave me external muscle groups to work on that tend to refer pain to the penis/would be helpful for my symptoms, these were; abs and psoas, iliac, adductors, hip, glutes, butt, rectus abdominus, obliques.

He told me to look at Clair Davies’ Trigger Point Therapy Workbook to see how to treat these - turns out I already have that book, so that’s good.

Just as an aside, Davies has a section in that book about how trigger points cause neurological and vascular symptoms. “Taut bands can also cause a muscle to clamp down on a vein, impeding blood flow in the area served by the vein. When the scalene muscles in the neck tighten [...] [they] may cause blood to pool in the hand, which then becomes temporarily warm and swollen.” This is something I believe must be active for a subset of CPPS patients.

Reassuringly he writes, “trigger points cannot cause bloodclots”

I digress..

So Tim really recommended to get moving again, he said this lockdown has brought on flares for a lot of people and he blamed lack of movement for it, at least partially.

He said a good combination would be to go for a walk, then do the some trigger point stuff, then have a hot bath. He also said it was encouraging that my severe testicle pain went away after a period of having daily hot baths and that I felt a bit better from stretching, in between this couple of flares I had.

I let him know I temporarily stopped stretching right now just because stretches have flared me up a bit at points and he said he wouldn’t recommend that, just to do the stretches but a lot lighter, like 50% of the stretch.

As well as this he recommended meditation, starting at a minimum of 2x 10 mins a day, building up to 2x 20 mins. We discussed this idea of central sensitisation. Again, I don’t want to misrepresent anything he said and my understanding is limited - but he said he doesn’t necessarily believe that this process occurs with CPPS, as it responds to treatment of trigger points. Nonetheless, he recommends meditation to become relaxed and wind things down. He said you likened the effort we need to put into becoming a relaxed individuals to the effort you need to put in to getting good at guitar. Daily practice, basically. He says the effects that some drugs have calming the pain associated with this condition can be achieved with meditation too.

Aside from this, he recommended trying CBD for anxiety and sleep. He also said he doesn’t see any harm in other supplements too although I don’t think he puts too much stock on them. That said, that doesn’t mean I don’t want to try the supplements discussed on this forum, I’m fairly optimistic they could help.

I think I that’s a pretty good summary. I’m feeling a lot more relaxed/reassured today and I’ve gone through Davies’ workbook to look at those muscle groups and how to treat them. I’m also talking to Gerard Greene this Friday, so I’ll update the thread once I’ve spoken to him.

I can’t tell if it’s just from abstaining or if it’s because I feel more relaxed, but the pain is definitely better right now.

Thanks for your time and support guys. Hopefully this thread will become quite useful for forum members as time goes on.

If you ask a PT about central sensitization, which the top medical experts and researchers believe is a key factor in CPPS, then there's a good chance that he will not know about it, not understand it, or reject it. The same goes for phytotherapy.

Tim is one of the best —if not THE best— PT for CPPS in the world. But don't quiz him about stuff he is not trained to understand.

His advice about stretching, meditation, baths, books, trigger points, muscle groups, and exercise is all good.

Yeah that’s fair enough, keep in mind I’m only reporting back on the conversions I had with those two and I’m not saying their opinion overrules anybody else’s in any other field etc. Also, I’m a complete layman with all this, so it didn’t occur to me that he may not have much knowledge on the whole central sensitisation side of things, but that’s quite logical now you point that out.

So is the meditation side of things, relaxation, not obsessing over the problem etc - is that the part that’s supposed to combat the central sensitisation? I’m sure that question is probably quite flawed, due to my limited understanding of the matter.

Anything that helps to calm the pelvic nerve dysfunction will help to quell central sensitization.

Great contribution, Juan Milo. Regarding the central sensitization I think it is a problem of majority of us. The pain patterns are deeply engraved due to the neuroplasticity. But I think that this neuroplasticity might be utilized also in positive way:during my decade of CPPS I had many flare ups but also many almost magical recovering periods when my pain went from 8/10 to 1/10 within 2 or three days.. And stayed on that low level for several weeks sometimes months.. So in the department of mind-body connection we have to revive those "successful comebacks" like an experienced tennis player is reverting the match when he is a set down.. I was always sceptical towards the Sarno theory of mind body connection but maybe there is something... By the way how is your situation meanwhile?

That makes a lot of sense and is a great way of looking at it European.

I’ll be honest about my situation - I know I’m over engaging in sexual activity to my own detriment, stopping the flare from fully winding down. I’m taking steps to combat this now like spending more time with family, leaving doors open so I have less privacy etc. Honestly I feel personally this may be my biggest step to overcome for recovery. I’m feeling quite guilty as well about the overactivity, but I’m trying not to dwell on things now and just move forward positively. I know the pain will wind down. I’ve been doing a lot of walking for my usual standards which has really helped too.

I made a post about Gerard Greene’s suggestions as well and Webslave kindly made it into its own entity. I’m starting the first step today which is the belly breathing, after a week of that it’s onto internal work (just stretching at first) - I think he’s recommending me to start slow because I obviously can flare by moderate interventions at the best of times.

I’ll keep you up to date, now I have an action plan, I feel I can be a lot more disciplined. I was during the kind of middle couple of months of lockdown with stretching and limited ejaculation and I definitely felt better - I’m going to get back into that mindset, starting immediately.

How are you doing European?

This summer is pretty rough. I had very good 2 weeks with only minor aches and very good mindset, basically I was very near this 13months (almost) asymptomatic period I had had enjoyed till June. I also had a lot of guilty feelings because this sweet period ended by ejaculation (in late June) with a lot of edging which is clearly the culprit. I was not careful enough because before that I had several ejaculations without major pain. So I thrashed my pelvic muscles/nerves over the edge once again.

Right now I worsened again, especially this nasty obnoxious neuropathic burning in groin and base of penis. The structures attaching penis to body are like hot burning wires if I can describe it more graphically.. But I see the reasons also in two other underlying factors: I stoped Klonopin which I took for 10 days in minimal amount and there is yeast infection (candida) in my groins once again.

I carefully re-read your recent entries because I think that there is a lot of similarities, though I think I have more neuropathic issues and you more muscular.

webslave wrote: Fri Aug 07, 2020 12:51 am Anything that helps to calm the pelvic nerve dysfunction will help to quell central sensitization.

Hey Webslave, I have a quick question if that’s okay. I’ve been guiding myself out of the flare with hot baths, stretching (less of it than previously and not as deep stretches to avoid aggravation), graminex (not too sure if it’s doing much) and I’ve started doing the abdominal massage Gerard Greene recommends. Noticing immediate benefits from the lighter stretching and the massage, but I was wondering, should I avoid stretching and massage on the same days?

It's an individual thing. Try it and see. As you improve, more intense efforts will be tolerable.

Thanks Webslave, the help is greatly appreciated as always. Stretching flared me up a little tonight, I think I need a hot bath before, the heat alongside stretching does wonders.

For the past week or so I’ve been having what feels to be fairly severe premature ejaculation. I’ve never had issues with this apart from once when things were very irritated from overuse/too much masturbation. I will be honest and say that I have masturbated too much recently, in fact at one point I thought part of beating CPPS for me was going to be talking to someone about my compulsive behaviour that has got much worse during lockdown. Recently I’ve got more of handle on that where I feel more confident I can manage the condition and much better at handling my compulsiveness. But I’m worried now after consistently having premature ejaculation for a week or so that I’ve added a further headache to my list... I used to be able to go for a very long time, now it’s the precise opposite. I’m trying not to get carried away though, it’s only been a week. Perhaps as the flare settles that symptom will too. Does anyone have any advice on this?