Health Organization for Pudendal Education

After six sessions, I ended PT this week because of the flares it put me in. Not worth it. We need relief from nerve pain, not exacerbation of it. Constant repeat flares are not good for our healing or for our central nervous systems.

Hi Lernica,
I'm sorry the PT didn't work out for you, but I'm not surprised. I'm so proud of you and impressed for giving it a go and then stopping when you realized it wasn't helping. There's nothing worse than doing what doesn't work over and over again. I'm hoping that one day soon, MD's will rethink this PT stuff and use them more for evaluation purposes, instead of an expensive, ineffectual treatment.
Any idea what your next course of action will be?
Hugs,
Karyn

For me, tweaking the meds. I like the sound of that marijuana pill, Miranol! (See the new thread on this.) I'm not ready to start thinking about surgery again after the five pelvic surgeries I've already had for endometriosis (all ultimately to no avail given my recent diagnosis of PN). If I eventually have to contemplate surgery again my first stop will be Dr. Potter in NYC for an MRI. Then PN nerve blocks (haven't tried them yet for the same reasons as above).

Ultimately I'm still hopeful that the worst of the PN will resolve itself over time and that I will not have to go the surgical route to attempt to maintain a reasonable quality of life. You are a brave lady, Karyn! I really really hope that the surgery will end your PN journey, sooner rather than later.

Hi all; I have a question for any one of you that can help me. I have been going for PT for 3-6 months off and on and have had 5 nerve blocks and several medication changes to try and get better control. Some day's are better and some day's are the same. I did notice one thing. The Therapist I am going to was recomended by Dr. Conway and only this therapist where I live( ct)but that therapist is not on the list of those recomended that the site has. Should that concern me? I note other's in CT and also many in Mass. not too far from me. I am concerned. Thanks so much in advance for any help.

Hi Janmar53,
Do you find this therapist you're going to effective? I wouldn't be concerned if she wasn't on the HOPE list. Maybe it's someone the Mods need to add? The most important thing is if you're benefitting or not. I'm sure Dr. Conways recommendation came from personal knowledge.
I hope this helps!
Warm regards,
Karyn

Janmar, I'm sure there are therapists who can treat PNE effectively who are not on HOPE's list. What type of therapy are they doing and is it helping?

I have a friend in CT who has a pelvic pain syndrome, although not PNE but neurogenic bladder...and is having a very hard time finding a decent therapist or neurologist anywhere in the State. If you have info about a good practitioner there by all means please share.