Health Organization for Pudendal Education

I had a potter MRI which doesn't seem to have found PNE but instead something called Pelvic Floor Congestion Syndrome. This is enlarged veins in the pelvis that can cause similiar symptoms to PNE and the veins are next to/near the pudendal nerve. This syndrome explains some of my symptoms but not all of them (numbness in foot, hyper-sensitivity to tough in vulva). The treament is surgery on these veins and has a 70% success rate.

Question:

1. is the MRI definitive about the PNE -- can it "miss it" or should i just forget about PNE and move on?
2. I have an appointment with Dr. Sheldon in LA to diagnose PNE -- should i keep this and see what he says?
3. Does anyone else have Pelvic Floor Congestion Syndrome -- there is very little info on this on the internet?

This is all very confusing. By the way, my Potter MRI was scheduled with only a one week wait, through my Vulvar Pain Specialist, Dr. Deena Harris in NYC.

Hi, Beverley.

I'm no expert, but I think if the pudendal arteries are enlarged, they might be pressing on your pudendal nerves. That would cause pudendal nerve neuralgia (PN) rather than pudendal nerve entrapment (PNE). In other words, rather than being entrapped by, for example, scar tissue or trapped and squeezed by muscles or ligaments, the pressure from the enlarged artery is causing irritation of the pudendal nerves.

The pudendal nerve supplies sensation to the vulva. Irritation of the pudendal nerve could explain hypersensitivity to touch to your vulva.

As for your foot numbness, I could only guess that maybe some of the enlarged pelvic arteries are putting pressure on other nerves, like the sciatic nerve, causing your symptoms.

Maybe try googling pelvic congestion syndrome for more info.

Sending hugs,

Emily B.

beverley wrote:By the way, my Potter MRI was scheduled with only a one week wait, through my Vulvar Pain Specialist, Dr. Deena Harris in NYC.

Wow, I've been waiting since December for my Potter MRI and I couldn't get an appt until May!

As for PCS (pelvic congestion syndrome) and PN/PNE. There is a lot of varied opinions on this subject. Potter has seen varices/pelvic congestion on people and they have had embolizations, but their pain hasn't changed at all. Some PN specialists say veins are pliable and not rigid enough to cause a true compression (a.k.a entrapment).

I've read Sacroiliac Joint Dysfunction can cause symptoms of PCS because it puts tension on the pelvic floor. Don't know if you have symptoms of SIJD or not. I sometimes wonder if it mattters what time of her cycle a woman is in when dr. Potter sees PCS. I mean, is it right before or during her menstruation, then wouldn't she be more apt to see some congestion? I did some reserach on PCS when I first starting having PN symptoms and I think the firstline treatment for PCS is birth control pills if I am correct and a lot of times this is enough to help people who truly have PCS. But numbness in your foot doesn't seem to match up with PCS. Do you have pain with sitting? That wouldn't match up with PCS either I don't think.

Not knowing your history or other symptoms I would say, definitely talk to Dr. Sheldon or a doctor who is knowledgeable about PN before taking what Dr. Potter sees on an MRI as truth. She is a great radiologist from what I hear, but she is not a PN specialist nor should she really give medical advice.

Thanks for the replies.

My symptoms get worse from sitting and this whole things was brought on after working alot and sitting at a desk for long periods of time last summer. Some of my symptoms are explained but Pelvic Floor Congestion -- it is supposed to get worse with standing or sitting, pain after sex, lower back, hip and leg pain and urinary frequency. But i also have vulvadynia, numbness in my foot and SIJD. I am 90% better after doing PT (which isnt supposed to do anything for Pelvic Floor Congestion) and taking Elavil.

So, i think i am going to see Sheldon and make sure the i dont have PN.

Also, i have had two POTTER MRI's -- on was for my lower back. And both times, i was scheduled with in one week. Maybe it is worth going to Dr. Harris just to get into see Potter earlier?