Pelvic pain, scared of the pain!

[Forest]

Heya, I was recently contacted by someone who asked me to share the following: "I think I saw a post from a male with pelvic pain. There's an excellent book called, "headache in the pelvis". I went to write in on the forum & lost the page."

 

[ezer]

Forest, "A headache in the pelvis" is dated and inaccurate in my opinion. It attributes pelvic pain to simple anxiety. The cure according to the author is to do a certain type of relaxation (that he teaches at seminars) and physical therapy to treat trigger points.
The author does not believe in Sarno's theories.

 

[Forest]

Yes, I wouldn't recommend it myself, as I don't like symptom or diagnosis specific books. However, a forum visitor asked me to post that (and thanked me afterward) and as an admin, I'm in the mindset of helping other people express their viewpoints. Presumably that person found something to like in it, and I trust the group to give dissenting views when warranted (as apparently you did!).

 

[CarboNeVo]

its actually an awful book and its written in form of an advertisment for Wise Andersons expensive pelvic clinic where he treats patients for astronomic amounts by physical therapy and relaxation.
It just reinforces the idea that there is something physically wrong with the person.
Also this clinic is sponsored by chronicprostatitis a site entirely dedicated to send people to that clinic.
It presents it self as an ultimate cure for chronic pelvic pains but I know many guys to whom it did nothing in the long term or these guys found their only relief following the TMS approach.
Btw Wise anderson was criticized even on this site by some members. His ideas only prolonged my suffering.

 

[Jason32]

There's actually not a whole lot of evidence for it either- there's only been one randomized, placebo-controlled trial for trigger point PT for CPPS. The funny part was both the placebo massage group and the PT group had good success rates, which suggests the placebo effect is very strong. The authors of the study even said: "Since all the study therapists were women, male patients might have responded to receiving non-sexual therapeutic touch administered by a woman."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2872169/ (Randomized Multicenter Feasibility Trial of Myofascial Physical Therapy for Treatment of Urologic Chronic Pelvic Pain Syndrome)

It seems the PT's now mostly focus on external chiropractic-type work (hence my previous post).

 

[NicoleB34]

I'd stay off pudendal hope- I was in a panic for months after my initial injury when I read that site. There's almost no successes (other than TMS) and the few who claim pudendal surgery worked for them either aren't fully cured (still getting nerve blocks, etc.) or claim it didn't take effect until three years later (that makes no sense whatsoever). There's some shady stuff that goes on there too now where it appears fake "success stories" are being posted for certain providers who are also advisors to the site, which me and several others called them out on. But you read those stories and just flip out- there's almost no evidence for any of the risky treatments they do (and insurance doesn't cover most of them) and if you question the safety and effectiveness, you get told that you're a pelvic pain patient with a rare disorder and you should feel lucky that any Doctor even bothers to treat you- how condescending! I just don't know how anyone would ever agree to do half the stuff they try- I'm way too wary of medical procedures to try stuff like nerve blocks, neuromodulation, pain pumps, surgery, trigger point injections, shockwave therapy and all the other crazy stuff they try. None of them get better with treatments either and it's a scary thing to read.

I know I talked about this with Ezer before, but I was curious with everyone who posted here- have any of you ever been to a pelvic floor PT and if so, what did they tell you? I still struggle at times with what I was told, because both PT's I went to told me my sacrum, coccyx and pelvis were misaligned and that was giving me PN. I asked them why my MRI came back normal and specifically said there were no misalignments, and I was told "Doctors don't know about this stuff." I know structuralism is poorly correlated with pain, and a lot of what they said sounded like chiropractic nonsense, but it does bother me sometimes because that was my very first symptom after I fell (and before I read anything)- that is, when I sit on a hard surface it still feels like my tailbone or sit bones are "sticking out" and always have a dull ache, like I'm sitting on a rock (or two rocks, one for each sit bone). But- I have a history of OCD, health anxiety, etc. and have "felt" abnormalities like this before that didn't really exist, so I don't know. And I've spoken with people that have gotten way worse with pelvic PT too so it scared me way too much to proceed.

the history of OCD and health anxiety is defintly me. i've looked back in my life where i was so convinced i had a certain condition, that i was practically willing symptoms onto myself. So i know i have the type of personality where TMS is common. I still go to pelvic PT simply for the reason that my brain (at least i assume it's my brain now) is creating knots. I still try to exercise hard which irritates my PN, then i got to PT, and there are a ton of new knots that have formed along the nerve, especially the Obturator muscle. When i dont see her, i feel like my pelvic muscles just keep winding tighter and tighter. However, she hasnt really made me better.......(because TMS!) she just keeps me from getting worse, by loosening the tight muscles and knots that are squeezing the nerve. I ask her "you release these muscles and knots, but why does it keep coming back" and thats when she said that my brain (with a mix of anxiety and a hypersensitized nervous system) is creating this tension. So she believes in mind/body approaches, which is good. I know that when she releases a huge knot next to the nerve, that it's a good thing. But like i said, it's temporary. The mind part is what i really have to work on.

 

[NicoleB34]

yeah, i was kind of disappointed when i read "a headache in the pelvis" because it was obvious that it was an advertisement for his clinic. I can see how the relaxation part of the program can be helpful, but it's probably not enough.

 

[adyxon]

I have attempted dr Wise Clinic last autumn. I can't say bad words about him . He has a very skilled PT Tom Sayer . The cost was very high for me $4300 + fly and accommodation . I have been there in October but only did his protocol for 3 months.
Why? Because at the end of December I found your website and I decided to go TMS.
I couldn't do paradoxical relaxation because I was deeply depressed and my pelvis and my back were constantly burning. Then I started to buy TMS books.
I only exchanged email with one guy from NY who got better after few months of protocol.
Now I am trying to develop new habits like going to walk 5 miles every day and work with Alan Gordon new program and Monte Huflle .

 

[stevow7]

Nicole,
I had delayed flare-ups after exercising. Usually a day later. In retrospect it made no sense and there was no explanation.
Many people report similar delayed reaction on pudendal sites. The only explanation I got from the pudendal "experts" was that nerves are "weird".

could i ask what you did to manage the delay pain?