Health Organization for Pudendal Education

I have been suffering from PN for over 2 years and like most people, I went the round of mis dx. I saw Dr. Conway and got a positive dx of PNE in three areas. I have been to 2 excellent PTs, one is quite well-known, but have not improved. In some cases, I have gotten worse. I feel as if I am running...

I am seeing Dr. Neerj Kohli in Boston this week to discuss this. Not sure if it is the right move. RL

Thanks, Violet. Today is day 5 and the headache is gone and my pain has returned to my "usual" level of about a 5/6 with medication. Ice packs are my constant companions… As is my seat cushion. I was hoping to find some relief; they told me I would between 3-7 days, but as the days pass, I...

Hi all. Was Dxd with PN by Dr. Conway and sent to a pain clinic in the Boston area. Since most of the oral meds don't really seem to work on my pain--or I cannot tolerate them, the pain doc decided to do epidural blocks on 2, 3, 4, of my sacrum. That was yesterday. I went in so hopeful…. Within hour...

Thanks, Janet. I tried all of the ones you mentioned, except for the lyrica and Tramadol, and I could not tolerate them. I tend not to get flares, but have constant pain that worsens as the day progresses. I work full time, have a stand up desk and cushions for when I do sit. And ice. Lots of ice. W...

I am new to the forum. Had surgery for ovarian cancer and now PN. I will see Dr. Conway soon, but now, my PCP is managing my pain, but not very well. Will Dr. Conway refer me to a pain specialist? I've got to say that the PN pain is worse than the pain from cancer. I never even heard of PN before an...

Thanks, Violet. This is very helpful. It is New Year's Day and I am trying to be hopeful, but it is tough. Blessings, Sarah

Hi All, I am new to the board. Like most of you, I was misdiagnosed --first my GYN misdiagnosed my cancer and then, after the surgery (and a new doctor), I developed what felt like bladder issues. I had 14 UTIs in less than a year. Was told I had IC (despite the fact that chronic UTI is not typical ...