Health Organization for Pudendal Education

Hello all,
I'm new to this forum. I've been suffering with PN for two years now. I had a robotic laproscopic hysterectomy and began experiencing pain three months post surgery.

I still believe in miracles and hope that these doctors will somehow come together, share their knowledge and begin healing us by perfecting their surgery. I hope to gain knowledge and support in this forum.

Blessings,
Ms. Rivers

Welcome to the forum, I do believe in miracles too. Have you tried any treatment for your pudendal problem?

Hello and thank you,

I've tried physical therapy and am on pain managment right now. I worked while in therapy for the first year so I basically undid the treatments as I moved forward by sitting and trying to work. I am now on unpaid medical leave and am only able to afford therapy once or twice a month. I do perform self-pt at home and my husband helps me. My average pain level ranges from a 3-5 or 4-6, depending on my activity or sitting levels.

Hi MsRivers! Welcome to HOPE!
I noticed your signature and wanted to comment that I had seen numerous "specialists" for a two and a half year period, who also told me it was all muscle related! While the diagnosis wasn't inaccurate, it was definitely SECONDARY to what my real problem was: nerve pain. Are you considering having any PN testing done?
Warm regards,
Karyn

Welcome Ms. Rivers. Hope you will have some of your questions answered here and find valuable information to help with your treatment plan. It's great that your husband is supportive.

Violet

Hello Karyn and Violet,

Thank you for the warm welcome. I have a lot of catching up to do on reading the various posts. Perhaps I'll learn something new. I haven't haven't had PN testing done other than an MRN. Mainly because my surgeon said he didn't used his PNMLT machine to test anymore. He found it was unreliable. Hummmm....Since the MRN was interpreted by a knowledgeable neurologist, I tend to lean toward his confirmation. HOWEVER, he also performs pudendal release surgeries so I don't know who to trust. One doc doesn't want to feel he can make a mistake and screw up a surgery and cause PN, and has the capability to fix or improve my circumstances, or make it worse, the other is saying "According to the MRN, you have pudendal syndromeI can help you." Who would you believe?

MsRivers wrote:One doc doesn't want to feel he can make a mistake and screw up a surgery and cause PN, and has the capability to fix or improve my circumstances, or make it worse, the other is saying "According to the MRN, you have pudendal syndromeI can help you." Who would you believe?

Considering that the first one HAS operated on women who got this pain from hysterectomy, tell him to go straight to h*ll. Then take the diagnostic information you've gained and use it to decide who to turn to for help out of the pain, either him or somebody else.

I lost time and got worse having surgery with the doc who does the MRN, Dr. Filler, and everything is overpriced and I'd say experimental. Not recommended especially when you can get a 3Tesla MRI with Dr. Hollis Potter in NY for much less money and it's 3d versus 1.5 resolution.
On this forum, you can learn through all of our trials and errors and hopefully have a shorter journey. Welcome.

MsRivers wrote:Mainly because my surgeon said he didn't used his PNMLT machine to test anymore. He found it was unreliable. Hummmm....Since the MRN was interpreted by a knowledgeable neurologist, I tend to lean toward his confirmation. HOWEVER, he also performs pudendal release surgeries so I don't know who to trust. One doc doesn't want to feel he can make a mistake and screw up a surgery and cause PN, and has the capability to fix or improve my circumstances, or make it worse, the other is saying "According to the MRN, you have pudendal syndromeI can help you." Who would you believe?

That's a really tough question. Your onset of PN pain with hysterectomy is not typical of the cases I have heard of where the onset is fairly soon, if not immediate, after surgery.

I agree that the PNMLT is not always reliable but neither is the MRN. In fact, there is no test for PNE that is 100% reliable. If money were not an issue, having the 3T MRI from Dr. Hollis Potter might be a good option because she has no financial interest in coming up with a particular conclusion.

What are your instincts telling you? Does physical therapy ease your pain at all and what does your physical therapist think? Do you have tenderness along the course of the pudendal nerve or is the pain primarily in the muscles? Have you tried Botox?

Welcome to HOPE, MsRivers. I am glad you found us for support and the wealth of information this forum has to offer but I am sad that you have to deal with this. I also started with PN after a lapascopic vaginal hysterectomy but my started right after the surgery. Some of my problems are also due to a bladder sling I had done at the same time.

The forum has a lot of information on the different dr.'s that treat PN. If you can afford to go to NYC and have the 3TMRI done there that is your best bet if you are concerned about any financial advantage for the dr. In older threads there is contact information and the specifics for what should be written on the prescription for the 3TMRI.