Health Organization for Pudendal Education

Hello,

Has anyone here heard or have a milder case of pudendal neuralgia???? I have the same symptoms but on a what I assume is a much lower level:

pain when sitting down
pelvic pain
loss of sensation in genital area

And whilst I am familiar with these, everyone seems to be experiencing them on a much higher level. I wouldn't qualify the pain I feel when sitting down as pain itself, it's more like a discomfort and it tends to go away maybe a good 30 minutes after I stand up. The pelvic pain I feel isn't always present, and if I do, it's not something I would say is that painful.

My BIG issue with PN is the insensitivity I feel in my vagina. I can still orgasm but it's maybe 30% of what I used to feel before, I can't really feel my vagina. Although I still control my bowels, I don't feel it to the same extent as before.

Anyone know about this? Thanks appreciate all the help I can get!

Yes, some people have mild cases.

Sudden loss of sensation could be cauda equina so make sure you have that ruled out.

Violet

Your story sounds kind of like mine. Biggest problem I have is the lack of sensation. Some issues with pelvic pain. I'm fortunate that sitting isn't really a big issue for me. I was diagnosed with pudendal neuralgia about 6 or 7 years ago, but don't know if that was an accurate diagnosis (I felt like I was "labeled" as soon as I walked in the clinic, before I even had the exam). I guess it could be a mild case, but I decided not to pursue any treatment .

I think of myself as a mild case of PN which kind of progresses. I take 50 mg amitriptyline and helps for 90% of the pain as long as I live like an 80 year old and walk and sit for a few hours a day max. I only go to school then home to lie down and rest. Mine was caused by a small infection of the stupid bartholin gland plus some previous scar tissue (immune reaction or smth). My pain started in the mons pubis and then the pudendal.
I am mild because I don't have pain with sitting, however I have pain in the territory of the pudendal nerve plus stupid paresthesia (buzzing, electric shocks).
After a big day, everything is buzzing. buttocks, soles of the feet, vulva...and to think I was 100% healthy 4 months ago! I'm in my 20s.

So yes, mild cases of PN exist. A lot of women get misdiagnosed with vulvodynia when they actually have PN. Some of them recover/get cured by taking Lyrica for a long period of time. There is also a lady here, username of jo1, who got cured by nerve blocks ... and her case was pretty mild as well.

all the best !

Thanks for the replies!

I am very happy to hear that people have been cured! You guys have really renewed my hope that we might get better eventually!
I'm pretty sure it's not cauda equina because I've only lost sensation internally, none really on the exterior but thanks for the heads up!

This is a bit of an awkward question (though what hasn't been awkward about what I've said before?) but do any of you deal with a lot of gases? I've been getting a lot of gases, particularly when I've been sitting down for too long and pelvic pain seems to diminish when I let them out, do any of you also have this?

Not sure I see a connection to sitting and gases but figured for me it was from all the fiber I try to eat to offset the constipating medicines. It certainly seems to put pressure on the nerve and released as you said after exiting. No fun at all and of course embarrassing around others!
Janet

I would definitely call mine a mild case.

Triggered when I sneezed while sitting in August 2013, but I had aggravated it back in 2009 carrying my kid on my back all day.

It peaked in mid-September from lots of commuting and tons of sitting in a hard chair. Throbbing testicle pain, radiating to mid thigh, burning/aching in perineum...

I then stopped really sitting for three months and did more exercise and stretching.

So it's now early January, and I can say that the discomfort is definitely a quantum below what it was. Not worrying about it seems to help a lot.

I don't have incontinence or sex problems. My poops are fine. It's just this raw, sometimes burning feeling along the pudendal nerve.

I'm guessing if I use a cut-out cushion (found a nice one ) and don't sit too much, and strengthen my core and stretch, it will eventually go away. Or I'll just live with it. It's annoying, but not fatal. If it gets bad, then I'll worry (rather than worrying it'll get bad, which just makes it worse).

Everyone who has recovered, and there are a few out there, all say it takes a long time. Months. Years. I could have some sort of ligament tear that is inflamed and referring along the nerve--they take 9-12 months to heal. So I guess patience and not stressing out are the keys.

Well said. All the best to you.