Starting pelvic treatment after 4 and a half years

[JuanMilo]

Carbonevo you are basically right that psychological background/anxiety

If you're concerned about anxiety, I recently found a thread about a guy who managed to get his severe anxiety under control with supplements:

http://forums.phoenixrising.me/index.ph ... 369/page-2

He notes that n-acetylglucosamine was the most potent anti-anxiety supplement for him (he argues it has an anti-psychotic effect too). Interestingly, NAG has been shown to dampen autoimmunity, and I'm quite intrigued how this supplement could effect CPPS. I remember reading a comment from a physician on here who thinks vein symptoms associated with CPPS may be a kind of autoimmune reaction.

I have some NAG and will likely start taking it soon. I don't know if I mentioned on this thread, but I had a severe reaction to medication 3 years ago that has left me with anxiety, depression and sleep issues, as well as joint pain and fatigue. I've read a lot of good reviews of this supplement for joint issues and a few positive reviews for issues such as Crohn's disease and MS, and also one positive review for insomnia. Some argue it fights inflammation in the brain/inflammation in general. I'm quite intrigued but intimidated by taking new substances after the reaction I had to meds, although it's likely to be fine.

Just as a side note, let's keep the thread on topic. I got the impression there may be some beef between you two. I appreciate the discussion and people pitching in. But please do understand that this is a thread I wish to use to help me (and hopefully others in the future) get better.

Thanks for your input guys

[carbonevo]

I had this pain several times on/off in 2009/10, being fully asymptomatic in-between...but the feeling of "fragile" pelvis was imprinted deep in my mind, I know...fear of any further ejaculation etc

This. This is the answer to your problem, you must work on your fear towards your symptoms, you have already done the physical part, it did not work, you are still struggling.. fear keeps you in the vicious cycle of pain, because your mind is NONSTOP focused on your pain.

Every single morning when you wake up you think of your pain, every time time you have sex you think of your pain and at least a 100 times throughout the day you monitor the freakin pain.

Think logically bro, how on earth could your symptoms worsen if they got better between 2009/2010? Everything heals in human's body.. why did this crap not heal but worsened instead? Because your brain got attached to it. Very very likely the pattern of your pain was similar to this, you got a muscle strain during sex -> it scared you -> u started chasing after docs -> they diagnosed you with chronic prostatitis -> you started googling your symptoms -> CPPS is INCURABLE!!! -> you freak out, you start reading more and more -> PUDENDAL NERVE ENTRAPMENT !!!! -> HORROR !!!!! This could've been healed in a matter of weeks but neural pathways were already created in your brain (read more about those) - your anxiety levels sky rocket, fear keeps the symptoms as this is now a thing of the central nervous system and you super sensitized to everything. Basically entrapped in a vicious cycle of chronic pain. The pain is very real (read Sarno you will understand why) and you think all the time that there is a physical damage, hence chasing after physical treatments which only provide a very temporary relief or none because the root cause is in the brain/central nervous system. I think I was very lucky to grasp this concept rather quickly, but I am a living proof it worked for me and there is a TON of success stories of people who got a relief understanding this concept.

Forget about Wise Anderson at this stage, although he partly understands the concept and even was about to meet Sarno in New York he is still addressing physical causes which in our case did not provide a long term relief.

These posts helped me a ton:
http://www.tmswiki.org/ppd/Breaking_the ... rdon,_LCSW
http://www.tmswiki.org/forum/threads/a- ... dence.562/
http://www.tmswiki.org/forum/threads/he ... ears.3556/

BTW, IMO Alan Gordon explain this better than Sarno, Sarno was the first doc who started looking this way, therefore people tend to attribute all the TMS/ mindbody stuff to him.

[dailysuffering]

I appreciate all that you do Carb.

[JuanMilo]

Changes in appearance of the penis is usually caused by nerves. An example of how nerves can influence the appearance of skin is the disorder Complex Regional Pain Syndrome (CRPS), which is also called reflex sympathetic dystrophy syndrome (RSDS). See some images of how nerves can change the appearance of body parts here

Hi webslave, hoping to get your opinion.

So I went and saw Karl again and I don't know what to make of the appointment. He performed an internal exam and did some fairly firm pressing on everything below 3-9 o clock, basically downwards towards my tail bone. He did feel my prostate briefly and said it felt normal, but said he couldn't manipulate anything on the top side of my pelvic floor (around the penis etc) because he can't get to that side of my pelvic floor from inside?

The advise I left with was to do reverse kegels, which you don't recommend, do you? And to massage my anus externally. He said that was because the opening is very tight. Like I said, I don't know what to make of it.

So far, getting down to london by the train and seeing karl has cost me somewhere near £600, not including the money I've spent while I'm down there. I'm a student and this is a massive amount of money to me, and I feel a bit like these minor interventions, stretching, external massage etc, aren't really going to do the trick. Karl doesn't want to pile too much on me in terms of self care, but I don't feel like I've had any noticeable benefit from his recommendations and I don't feel like the interventions are drastic enough to bring about change. I just don't know what to think really. His latest recommendations have made me lose a bit of confidence in his suggestions - after already knowing your stance on reverse kegels for one, and for another, because massaging my anus just seems so far detached from my condition.

In fact I feel quite confident the external abdominal massage he recommends caused my testicle pain to flare, since this is an issue I haven't struggled with very much for a long time. The pain came back with the massage and I stuck with performing the massage for a good two weeks thinking it was a flare, but I continued to have heightened pain the whole time. Karl didn't really make any comment when I told him that the massage was aggravating my symptoms. Also, he doesn't seem that preoccupied with looking for trigger points - I'm not saying he doesn't look for them, but I don't get the sense that's a big priority of his, he doesn't make a big deal out of trigger points, which surprises me because that seems to be a cornerstone of most people's recoveries. It's more about tight muscles.

Long story short - I can't afford to keep going down to London and I'm feeling a bit disheartened because I'm not sure about Karl's recommendations. He seems like a nice guy but I'm not sure he's the therapist for me.

[webslave]

I'm not a fan of reverse kegels, which involve tensing the stomach muscles. Surprising he cannot access the front of the levator ani muscles ... makes me think he is not the real deal.

[JuanMilo]

I'm not a fan of reverse kegels, which involve tensing the stomach muscles. Surprising he cannot access the front of the levator ani muscles ... makes me think he is not the real deal.

Yeah he kind of made out like it can't be done I think.

The other thing that put me off this time - Karl rents an office in the building he's in on that really expensive medical street in London (Harley street), and there were two female employees of the building outside the door, taping boxes or something, almost the whole time. I could hear them fine, so unless I lowered my voice they'd have been able to hear me. I really wasn't happy about this. Obviously it wasn't a fault of Karl's but when I'm spending so much money to see him, I don't really expect that kind of thing to happen.

Besides all this - I'm just wondering where to go from now. Should I just get a tool and start doing internal work? Needless to say I'll to have read up about it, I was hoping Karl would have taught me but I've been left with stretches and external massages.Seriously feeling a bit lost right now.

[webslave]

Your experience with Karl Monahan will be a warning to others.

Keep exploring this forum; lots of strategies here. Focus on stretches, relaxation methods, and self-massage with a wand. Take it slowly. This is not a dangerous condition, CPPS, just very annoying and inconveniencing, and it can be overcome in time and with the right approaches.

[JuanMilo]

Thanks a lot webslave! Really appreciate your input. Do you recommend any particular wand?

Don't get me wrong about Karl, he does seem to have some insight into this condition and some useful recommendations about behaviour patterns that may exacerbate symptoms, and I'm going to continue his stretches and recommendation to meditate daily. But after two visits amounting to about 350 pounds together (travel is 100 pounds on top of this each time too) I'd have hoped to have been guided towards some kind of meaningful intervention, rather than just minor behavioural changes and light stretching. I'm not sure I'll get that with Karl, and I don't have the money to find out whether he would eventually lead me down that path.

[webslave]

Do you recommend any particular wand?

No, some people like the Theracane, others the crystal wand. They are not too pricey; try them both maybe?

[JuanMilo]

Do you recommend any particular wand?

No, some people like the Theracane, others the crystal wand. They are not too pricey; try them both maybe?

Hi webslave. If I'm honest that experience with Karl took the wind out of my sails with treating my condition.

I have the book 'Ending Male Pelvic Pain' by Isa Herrera and I'm thinking of following the routine in that. I do feel like the stretches Karl gave me were helping so I need to crack on again.

The trouble is in the book I have she's saying to rule out infection before doing internal work. I had this prostate massage/fluid test lined up, but I really, really don't want to have it. The URL say me down and just said, matter of fact, 'risks are bleeding, infection, relapse'. He told me the procedure is 'pretty brutal' and will make me worse for a number of weeks. I just want to steer clear of it but I have nagging feelings about it all.

I guess I'm in a weird spot with everything. On top of all this I've been diagnosed with ME/CFS so it's hard to motivate myself at times when I feel like crap.

Any words of advice here? I'm almost certain to start the techniques in the book I mentioned but I'm just a bit fed up again after what I deem a failure with Karl!

[webslave]

I also had CFS; the fact that you have CFS is an indicator that you are not infected. CFS is a comorbid condition, more or less, with CP/CPPS. On that basis alone I would bypass any further microbiological testing.

[scotcan]

Hi Juan,

I also bought the Isa Herrera book and have just finished reading it. I was thinking of trying her program myself and was wondering if anyone has had any success with it? The book itself seemed quite good, although it would take a lot of time to do ALL the recommendations! There are some things I already do and some I don't, but think may help.

The book comes highly recommended from Dr. Jeanette Potts, who is one of the leading clinicians in treating male pelvic pain.

[JuanMilo]

I also had CFS; the fact that you have CFS is an indicator that you are not infected. CFS is a comorbid condition, more or less, with CP/CPPS. On that basis alone I would bypass any further microbiological testing.

That's interesting! To be fair the fatigue came clearly with the severe medication reaction I had, from which I have long term issues I didn't have previously (joint pain, sleep disturbances which can be severe), but I can see what you mean about CPPS being comorbid with cfs. Did you recover from CFS too then? My issue with medication is another reason I don't want to have an unnecessary procedure, much less the fact that the uro says the procedure will be 'brutal'. Being put under anaesthetic for a 'brutal' manipulation of my prostate gland.... no thanks!

[JuanMilo]

I also bought the Isa Herrera book and have just finished reading it. I was thinking of trying her program myself and was wondering if anyone has had any success with it?

Hello there!

I recently typed in the name of the book and found someone who said they were recovered from using her protocol.

I started her stretches today but I've sort of cut out the parts that involve just lying there to see how your muscles feel and visualising stuff. Perhaps I'm wrong but I'd rather just do the stretches.

What's confusing is that the first stage is almost all referred to as some kind of 'kegelling', when I just thought it was about stretching and breathing. I know that webslave doesn't recommend reverse kegelling and other such stuff.

I do find that these sorts of stretches do seem to ease my base level of discomfort I think, so I'm starting slow but I think I'll stick with it. These stretches do seem a bit more intensive than the ones given to me by my previous therapist. That's a good thing to me, as long as no aggravation is caused.

[JuanMilo]

There are some things I already do and some I don't, but think may help.

What things from the book do you already do, out of interest?

This is the forum post I found where someone says they used Isa Herrera's protocol

Unfortunately there aren't any trained PT's here so any work I did in that arena I had to do on my own. I purchased a Headache in the Pelvis after having prostatitis for a month. So I started on the stretching right away. I didn't feel comfortable with attempting the internal work until I read Ending Male Pelvic Pain (Isa Herrera). It is a very good book because it basically outlines a routine of what you should do. It is much more simply written and not nearly as scientific as a Headache in the Pelvis. It was nice because I didn't have to think about what to do I just turned the pages, did the exercises, stretches and internal work and was on my way. Although my wife was more than willing to help I ended up using a TheraWand because it allowed me more freedom to attempt trial and error. I did this type of work religiously for 5-6 months. The stretching is still a big part of my routine it's just that I now do it as part of my gym work and not at home. I knew this would be an important part of my recovery because when I was in my worst pain I constantly felt as if my pelvic muscles were clenched. Almost as if I was trying desperately to keep myself from urinating despite the fact that I knew I had just voided. My opinion on going to the clinic is that you should hold off. Given that you are already going to PT and have the book I think you just need to give it time.