6 years with CPPS

[European]

Although I got the main point of paradoxical relaxation, I am still struggling to get any practical effect. I agree that calming down the aroused sympathetic nervous system is one of the key milestones in road to recovery, but I guess that paradoxical relaxation is not the one and only way how to do it. It is really difficult to master, in comparison with lets say CBT it is much much more difficult. There are some therapist in my city working with classic Jacobson progressive relaxation, so I might further investigate that avenue. BUt agree with W/A protocol that anxiety (especially this long term ingrained hidden underlying anxiety) play a major role in this disorder. Can't imagine any other disorder which fuels the anxiety in that spectacular way as CPPS does.

[Amonges]

Agreed . I feel as well anxiety fuels my symptoms to the point I feel pain especially tightening in the abdomen in my case.

[eltenso]

Hi European,
I recently attended the Wise clinic in California, and I was really disappointed with the paradoxical relaxation. It is basically a form of meditation. You are instructed to relax and then to focus on "the feeling of relaxation", which equals to focusing on your body awareness, rather than the flow of thoughts, etc. I expected the paradoxical relaxation to entail some contraction of the muscles first, like the progressive relaxation, but none of the sessions we had with Dr. Wise included this. Now, what kind of therapists work with the classic Jacobson progressive relaxation? I fully agree that bringing down the sympathetic nervous system is the key to healing (alongside internal trigger point release), but the paradoxical relaxation is not the only means to achieve this end.

[European]

Eltenso, I fully agree with you. The physical part of the healing is pretty clear: stretches, trigger points release and myofascial release/massage are the key to recovery without any doubt. Trigger points might be individually placed and the key task is to find them and treat regularly and properly.
The mental/psychological part is much much more perplexed. Our personalities are different, our coping mechanisms with anxiety/depression as well. There might be a lot of underlying reasons as well as perpetuating factors. Concept of paradoxical relaxation might work, but is hardly an easy to follow concept, hence mixed results...

[European]

Hallo guys, small update here>

Yesterday after cca 6 weeks I visited my PT. Unfortunately he was little bit in a hurry so we did not have time to discuss all the issues (maybe he got the feeling that he had listened to it thousand times..anyway).
We concentrated on internal work:

1. There were 2 or 3 very painful trigger points in my posterior pelvis, around coccyx. This is the are which is not extremely bothersome for me, without pressing I dont feel any pain/discomfort in coccyx. My presumption is that these are secondary trigger points, evolved during my several years of CPPS.

2. Anterior pelvis - this is the focus of my pain. My PT tried to palpate high enough (positions 1 and 11). The pressure partly replicated my pain pattern: when he palpated the tissue, I felt pain reference in base of penis and in proximal part of shaft. But I felt also some feeling of fullness, probably he irritated also prostate. The palpation did not referred any pain to the tip of penis (I dont have any problems with the tip). Could it be considered as a confirmation that the chief trigger points are in those part of pubococcygeus which are refering to base and shaft? (W/A are writing that pubococcygeus is most troublesome muscle in men CPPS and is referring to base, shaft and tip of the penis).

3. It is pelvic myoneuropathy, that means that nerve aspect is also pretty important. I feel the right side is terribly irritated, especially groin, scrotum, penile shaft. Everythings points toward the highly irritated right pudendal nerve. I am starting to high up Lyrica and we will see...

4. Last few weeks I am struggling with candida (groin, penile meatus), I tried Flukonazol which initially eradicated the skin manifestations but they always come back. I am on low sugar diet. My PT said that candida is surely contributing factor (candida releases neurotoxins) but my main underlying reason is neuromuscular (I agree).

[Cree]

Euro:

Have you tried going gluten free before? I’m on week 3 of that.

Chris

[European]

From beginning of this year, basically I am on the low gluten diet. No beers, no pizza, no chocolate and maybe 2 or 3 slices of bread monthly. Not waterproof gluten free, but minimal gluten. Diet does not have any impact on my condition. My problems are completely muscle/nerve based without any problems with bladder. Even some minor urinary symptoms I have (dribbling, split stream) are more likely due to myoneuropathy of pelvic basin than bladder related.
This is the triad of issues influencing my pain: sex/ejaculation, depression/anxiety, long sitting/driving.
All other things do have only minor or no influence.

[eltenso]

Here I am again,
unable to fall asleep due to the burning sensation in my urethra., which worsen each time that I have to pee...
The pubococcygeus (PC muscles) is indeed the most troublesome muscle for those of us who have mainly urinary/penile/testicular pain or discomfort. In my case, it's all anterior, the posterior part of my levator ani is normal. Tim Sawyer identify trigger points around 1 and 11, all near the prostate, and he press on them way harder than the two PTs I have seen before. One of the trigger points reproduced some urethra and penile pain, but none of then reproduced my testicular pain. Now, in the days following the clinic, I experienced a considerable improvement. Less nocturia, and no pain or discomfort during ejaculation. But, alas, that only lasted for ten days. Now I am back to my habitual state. I was convinced that the improvement that I had was the result of Tim Sawyer's releasing some of those trigger points during the three sessions he worked on them, but now I am starting to entertain the notion that my transient relief might have been just a placebo effect. We are dealing with a difficult puzzle here...

[eltenso]

European,
have you tried perennieum massage? I think for your symptoms that might work. There is a new book out there, Pelvic Pain. The Ultimate Cock Block, by Susie Gronski. When you purchase it you get a code that gives you access to a video showing how to do that.

[European]

Eltenso, thanks for the book advice, I will surely look for that.
I tried to massage my perineum many times, but the underlying problem is still persisting. Difficult situation, first two years I was on/off with my pain, being able to fully recover in 2-3 weeks when no ejaculation/long sitting etc. was present.

After that my problems became chronic and I was never fully asymptomatic, although better times are interchanging with sometimes horrible flare-ups. Difficult is that the flare-ups are pretty long, lets say 4-5 weeks...

The principal problem is some clot/clench 2 cm behind my penis, on my right side. That was the first problem I had years ago. What is interesting that this faded away always after long sleep and relax (so not after stretching) which makes me feel that it might be irritated pudendal nerve. Pain is exactly in the dermatom of pudendal nerve. Maybe I will try once more high resolution ultrasound, ultrasound guided trigger point injection, pudendal nerve block or Botox into pubococcygeus. I know this is not mainstream CPPS treatment, but my miserable situation makes me to play a little bit more risky game...

My pain was never fully reproduced by palpation - I mean I never had this "aha" effect, "this is the spot", neither by palpation of puboccocygeus, nor by palpation of pudendal nerve in Alcock canal or elsewhere. Difficult to judge. I am sure that Tim Sawyer would be able to shed some light onto my condition...

My posterior pelvis pain is only marginal and I have no substantial urinary problems (maybe split stream and some dribbling but thats all).

[eltenso]

European,
Susie Gronski's book does not really says anything new. It is the same stuff we have read in Wise's book, and Isa Herrera's Ending Male Pelvic Pain. Only Gronski's book is more simple, with colored illustrations, and she uses a lot of vernacular, even slang, rather than the usual clinical terms, in an effort to come across as "cool" to her readers and potential clients. She has set up a clinic in North Carolina where you are not her patient, she teaches you how to treat yourself, so it is not exactly the same concept as the Wise's clinic. And she is very aggressive in marketing her products. My point: Gronski is a sign that the health profession is starting to pay attention to the CPPS epidemic. There's a niche there...

Now, regarding the pudendal nerve discussion. In the Wise clinic there were a couple of people who tried pudendal nerve surgery in the past, to no avail. Actually one of them, a lady who can not sit, said that she is worse off after the intervention. David Wise is keenly against the whole pudendal nerve entrapment theory, but that is to be expected, as he advocates his protocol as the only way to manage this syndrome. After having read quite a bit about these issues (it is funny how this annoying condition forces us to research and analyze a lot...), I think some people have just internal trigger points, but others might have some nerve issue as well. I mean: if the nerve is somehow damaged, would the trigger point release and the bringing the sympathetic nervous system down suffice? Wise argues that sticking to his protocol will eventually desensitize the whole pelvic region. He argues that since there is no such a thing as an entrapment of the nerve, Botox injections and that kind of interventions have no point.

Finally, Tim Sawyer is a great physical therapist. In my initial evaluation I could tell the difference between him and the other two physical therapists that I have seen in my area. He easily identified a trigger point in the gluteus minimus that reproduced the sciatica-like pain that I have had for years, and that no doctor of PT seems to have a clue about. And he was way more resolute in pressing the area around the prostate. For me, Sawyer was by far the best part of the Wise clinic. For those who can not afford attending, I would recommend going to Sawyer's private practice in Los Gatos, CA.

[European]

Eltenso, many thanks for your valuable insights. I am somehow dissapointed from both of my PT, who delivered great job in the beginning, but obviously are not able to target my main trigger point high enough in the pubococcygeus. I am struggling with right adductor as well.
Regarding pudendal nerve:I fully agree that true PNE is pretty rare condition and majority of CPPS sufferers do have complex pelvic myoneuropathy. Even the neurosurgeons dealing with PNE wrote that it is mostly the consequence of some injury, mesh surgery, birth complication (women) etc...But it does not mean that there is no muscle based irritation of pudendal nerve and neurogenic inflammation. I think that high resolution ultrasound might be valuable tool to show the swelling of the nerve. I got the feeling that I am recently struggling more with neurogenic inflammation (e.g. pin and needles in scrotum surface) than with pure muscle dysfunction.

[European]

I would like to add small update before the summer.

After really horrible April/May with vigorous flare-ups and highlighted anxiety and depression, I have to admit that last weeks are significantly better. Feel the difference, debilitating neuropathic pain has been transformed to low level ache/discomfort. Life is much better now.

Major change was in medication. After cca 5 weeks I withdrew from Lyrica, which absolutely did not help (I was whole days in brain fog but with hell in pelvis and Lyrica even aggravated my anxiety) I switched to combination of low dose Elavil+50mg Atarax. This combination is combating my pain/anxiety much better, especially the panic attacks. I somehow slowed down and feel much better.

Still struggling with candida in my groin and sometimes even glans area, which is obviously not the primary underlying reason of my CPPS but adds some portion of problems.

Tomorrow and Wednesday are my last two days in my office, after that I am taking 7 weeks vacation. Summer is always helping and I am prone to believe that this will work also this year.

[Chriss]

Hi European
Glad to hear hopeful message from you. It's 4 months I'm trying "rTMS". My doctor is optimistic that this procedure can be helpful. I also had a lot of fluctuation during the last few months. If I can get good and durable result I will update you. Good luck and have nice times in your vacation

[European]

Guys, I think it s time for small update. My last entry was 2nd July, so plenty of time to refer...

1. July+August
Like almost every year, I had great summer. I mean really great, most of the days no pain and maybe small portion of muscle-based discomfort which did not stop me from any daily activity. I tried to be active, a lot of swimming in the sea, a lot of hiking and relaxing with my girlfriend. I was even able to drive 5-6 hours without any significant worsening. I calmed down and felt that my autonomous nervous system is working properly. July and August are always my best months, I am somehow able to tune myself on that calm, lazy, "Mediterranean" way of life, when you don't care about a hour or two... no hurry... a lot of reading, walking, sometimes dinner or few beers with friends. And a lot of sun and relax. Vacation pure.

2. September-December
Every year I am facing the September with a bit of anxiety, because the return to work means more stress etc. But this time my good mood lasted the whole autumn. I even have not been to my PT for 4 months (which was a mistake). I was making my stretches 2-3 times weekly (I know I should have done it every day). In October I withdrew from all medications (Elavil, Atarax, Quercetin). Nothing wrong happened, my good times were going on... Around Christmas I sometimes thought that this is maybe lasting forever... (Unfortunately not)

3. January, February, March...
After new year I started to struggle, but initially not with CPPS but with very nasty bronchitis. I was out of my office more than 2 weeks and was too weak to stretch etc. So my discipline went pretty down. The things were still acceptable but I felt that overall situation is slowly worsening. One night I had a dream that I have a flare-up (I did not have in real time)... then my "mother of all trigger points", a clump in anterior pubococcygeus, very high placed, started to be prominent. Few days with pure muscular pain were replaced in early March with full-blown flare-up with muscular as well as neuropathic pain.

Today I was at my PT (after several months). The treatment was very very painful, but my PT asserted that my "strings*" are not that bad as he expected. But certainly there are many. The level of my anxiety is higher again but not so much as it once was. I hope that this will be only short term flare-up and the good life from second half of 2018 will soon come back.