Sorry for starting yet another post in the welcome section but I need to share this to my fellow pelvic pain sufferers. I had to also quote this from ezer because I was reading a previous post that initially made me think about this whole PN diagnosis.
ezer wrote:
I am not sure if the OP is still reading this thread but I think before considering injections and progressively more invasive procedures, he should explore the source of his prior anxiety.
None of the pudendal invasive procedures will help his co-morbid fibromyalgia and CFS that he described in his early posts IMO.
I was doing progressively better in the 2nd half of 2003 but then I had a relapse in January 2004. It is when I discovered PNE by searching the web. I was then diagnosed repeatedly with PNE by PN-aware doctors and in retrospect that label convinced me that there was something wrong that needed to be fixed. I had non-stop pain for the next 10 years...."
I am tending to start to agree with ezer on this one. I feel like I created this whole PN pain cycle for myself. Initially when the pain all started I found this HOPE forum. I read all the horrid stories on here, the crazy non success rates and the lifelong fear of never getting better. Instead of tackling this with a fresh mind I started this "PN" journey in a fearful state. The mindset that I have PNE and that I am scared to do anything in order for my problem to not get worse. Well, I am starting to take all this mind body stuff a little bit more seriously now as I am NOT getting better by simply treating the physical so called "fascial restrictions". I was up in NYC for a treatment back in March (I believe) with some top notch osteopath that apparently knows his stuff about fascial restrictions. If anyone can get you better its this guy. Anyways, turned out this appointment did nothing for me. During my trip to NYC that week I met a professional Rolfer that had been doing these physical treatments for 20+ years. We had a long discussion about the effects of fascia and the structural anomalies found in the human body. We talked about the basic trigger points, adhesions and these so called "fascial adhesions". But he raised many good points. He first asked if any one in this world even knows what a trigger point is? Can you even google and show me what a trigger point looks like? So me, knowing all that I had studied, i couldn't even address such a basic question. I said "well, its a build up of lactic acid that eventually forms a tension in the muscle blaa blaa" Sorry? its what? I gave it another shot, and again, I couldn't really come up with an answer. And that's when he said, what is more important, the muscle or the nerves surrounding that muscle? and I immediately started to see what he was going to say next. You see, trigger points and muscle tension only exists for one reason (usually that is) when a nerve becomes irritated (for whatever reason) and the body tries to protect itself, or the impulses of the nerve send these false irrational signals to the muscle. Forming some sort of ball of tension and pain. But, why do therapists treat the muscle/fascia if the nerve is the one to blame? And this is the whole basis of this guys philosophy now. He went from utilizing a full out physical and bio mechanical approach to healing to embarking on a life of placebo and mind body science. He told me that in his 20 + years of his profession that he has never met a person that got better from a physical treatment. He also said there is no way to actually remodel fascia. You can stretch fascia and hold it there for an hour and as soon as you let go, it will go back to its exact state it was previously. He said more people get better from adapting the mind body approach to healing than just the physical approach. For those of you who never heard of placebo studies go read about the sham knee surgery. What you believe in your mind will strongly effect the outcome of the results. For ezer, well he got better because he formed in his mind that there was nothing wrong with him. After a long time, his brain stopped sending those false nerve signals of fear and tension and naturally (i am assuming without physical therapy) his pain went away. Again, focus on the nerve (aka the brain also) and the rest will follow. Another thing that he told me that I wanted to share. His words "Did I ever tell you that after being in practice for some years that I realized a pattern that the only people who get better were the ones who saw their pain as a lesson? Others just want to get back to their life but they never could. Somehow lesson is transcendent." Which got me thinking, if that is the case, then it has to be a mind body syndrome also. Look in the success stories and try and pick out all the people that got better, I guess that is also a common denominator in their successes. I read a woman (or a guy..i am not sure really lol) who stated that they got better when they prayed to God, respected the universe and took this time to learn a lesson. Apparently they are somewhere like 95% better or something. Anyways, who knows if there is truth to all of this. A "lesson" and mind body is transcendent to healing.
I still would like to believe its a physical problem, and I want to find my physical problem, but countless therapists and the worlds best therapists might I add, all can't find a problem, well sh**, then how can I get better if there is nothing to find? I still do not know if I believe in this whole mind body approach but in the meantime of doing some physical treatments I have definitely also embarked on the mind body approach. Ya okay, people have compressed nerves etc. I am sure everyone on this forum read about how they did studies of multiple cadavers and found that many of them had compressed pudendals while they lived a pain free life. I almost feel like nerves can be compressed but limiting the inflammation around the nerve is more important than eliminating the compression. Nerves thicken when it is inflamed, causing even more of a compression. I feel like maybe thats why mind body works sometimes too because it does enough to limit the inflammation, and then the nerve reduces in size, further decreasing the compression and pain. Until the problem resolves completely.
Anyways, I could write more but I feel like I vented enough for the day. I feel like maybe Violet shouldn't be the chair of this forum because I write novels on here. Totally kidding Violet.
I am starting Hyperbaric Oxygen Therapy tomorrow also. Expensive and I know some people will say don't waste your money (save those responses btw), I feel like you need to find a treatment that your comfortable with. Like I said in previous posts, this rolfer also said, its not what therapy you do that defines it successful, its finding a therapy that you find more SIMS than DIMS (safety in me vs dangers in me) and your body will respond better to those treatments than the ones where you may potentially think will get you worse. If you think the treatment will get you worse, then it will. May not be any truth to what I am saying, but I still had to say it.
Venting done
-Dom
If you ever have "time" let me know. 