Health Organization for Pudendal Education

Well, Charlie... I clearly don't have time to search forums for posts that say conservative treatments don't work. However, having been on the TIPNA forum, the old pudendal.info forum and now this one for the past 5 years, I definitely have seen posts where people claim that conservative treatments don't work and that surgery is *the* thing to do (which is definitely the case with many people).

Okay I take your point.

If conservative treatments worked for people, why would they ever go on to surgery? I think we've heard from a lot of people for whom nothing worked, so they took their best shot at something more. I don't think people are trying to be the "cool kids" doing "the" thing for it. I actually think you have to be out of options.

Hey Charlie;
Being on dial-up I can't open the sites that have tons of pictures and are very lengthy. I wish I could. Then I could prove to disability, ins. and some of the very uninformed docs I've been to that I don't stay up nites dreaming up this stuff. I swear some think I make this **** up. The ins. tells me constantly "we don't have a code for that". I tell them to get one.
Oops, off the subject. My point to Abmia22 is there is another way of looking at things. To get out of horrible pain, I was willing to try anything. Also, I'm glad he's surrounded by family and friends that are doctors, but what kind? I wish I could remember where I saw it, but a DOCTOR wrote "A doctor only treats what he knows". It was early on and I was still trying to figure out what I had, so I didn't print it, but I should have. Nothing truer has ever been said.
Thanks Charlie. If I ever get off this mountain where I don't need to use dial-up I will try to find the articles.
Nite
Doreen

abmia22 wrote:they see a bunch of veins compressing the dorsal nerve of the penis. No interventional radiologist will touch these veins.

Are you sure that's what's causing the problem though abmia22? Potter also saw varices in my case and suggested I have them embolized. But the numerous PN docs and urologists I discussed it with all said that there's no evidence that veins (no matter how distended) can compress the nerve...they're simply too soft to exert that kind of pressure.

Anyway, assuming they are the problem, why do the interventional radiologists refuse to embolize them in your case?

Also, re. Dellon...I find the best way to get a response from him is to contact him directly via his site ( dellon.com ). There's a link on the right side of the homepage to e-mail him directly. When I send messages that way I usually get a response quickly (as opposed to when I e-mail him from within my gmail acc't., which never seems to work).
Hope that helps, PS.

I don't think it is really hard to understand, Celeste...I am obviously talking about people who have a similar type of pain but it is caused by something that will respond to conservative treatments and clearly not people who have an actual entrapment (since not *everyone* who visits these forums will necessarily have an entrapment, correct?). I also did not mean to suggest that surgery was the "thing" and I certainly understand that the people who go to surgery have run out of options to treat their pain.

sgrandy wrote:I don't think it is really hard to understand, Celeste...I am obviously talking about people who have a similar type of pain but it is caused by something that will respond to conservative treatments and clearly not people who have an actual entrapment (since not *everyone* who visits these forums will necessarily have an entrapment, correct?). I also did not mean to suggest that surgery was the "thing" and I certainly understand that the people who go to surgery have run out of options to treat their pain.

I think the question here though is what do we define as 'conservative' treatment? What we usually mean by this is myofascial physical therapy. Yet there is so little evidence that this is an effective treatment for pelvic pain. In fact a study presented in Chicago just last month showed that myofascial PT for Pelvic pain did not have a significantly greater affect than a regular full body massage for the symptom of pain as measured on the likert pain scale.

Sometimes I think 'conservative' treatment is a euphemism for unproven treatment. Certainly the arguments for 'trigger points' are incredibly controversial. I agree though that not everyone has an entrapment.

Charlie wrote:I think the question here though is what do we define as 'conservative' treatment? What we usually mean by this is myofascial physical therapy.

Medications, Botox injections, hyperavoidance of sitting and aggravating movements, seat cushions, meditation, prayer, herbal supplements, acupuncture, bee venom injections, heparin injections, B-vitamin injections, creams and suppositories, cold laser therapy, radiofrequency ablation, shock wave therapy, chiropractic manipulation, TENS units, neurostimulators, Ketamine infusions, epidurals, and steroidal nerve blocks.

Basically, if it's not nerve decompression surgery, people consider it to be conservative treatment since you can stop and/or reverse it.

Well said, Celeste!

Celeste & Karen
DITTO
Happy Holidays to all.
Doreen