Health Organization for Pudendal Education

I am a 68 year old woman, married with 3 grown children.
I have had burning pain in the vulva for over 15 months now.
I am able to have sex with no problem thank goodness.
I'm usually ok in the mornings but gradually it comes on during the day. By late afternoon I'm in terrible pain. I can't wear underwear or even pants most of the time. I don't use any fabric softener, or soaps with fragrance or addictives. No dryer sheets. I rinse my vulva with plain water after peeing.
You can't see anything down there. All my tests for infections/bacteria/yeast all come back normal. I have tried numerous creams/ointments and pills to no avail.
Drugs I've tried.

Hormone cream
Estring
Doxcyline
Clindamycin
Hydrocortisone.
steroid cream (Triamcinolone)
Nystatin cream and pills for 1 month
umteem...zoles OTC meds for yeast.

About a month ago my lower legs and feet go to sleep toward evening. They get very cold and achy even if it's 80° in the house. Toes get sharp stabbing pains but this has only happened 4 or 5 times.
The Dr. is referring me to a Neurologist for nerve conductive tests.

But first a P.A. women's specialist is going to do a Colposcopy with possible biopsies tomorrow. This is her specialty. I have not a clue what she will find or what they can do.
After reading up on PN I feel it might all be related and after I sent my primary Dr. the PudendalHelp website he agreed it might be related.

So this is where I am right now. Not a happy camper at all and to be honest not feeling all that optimistic about this colposcopy.

I have a lot of reading to do here .

~sad~ Jewels

Hi Jewels, welcome to the forum.
One of the main symptoms of pudendal neuralgia is if you experience pain or tingling or burning anywhere along the perineum when sitting. If your pain is made worse by sitting, but is better on a toilet seat, that's a fairly strong indication of PN or PNE. You can't see PN, as it's not the surface skin that's affected but the path of the pudendal nerve laying underneath. Many of us find underwear to be a problem, I always look for seam-free panties and no tight elastic on the legs either!

That's great that your sex life is fine, you're doing something right! . Entrapment can cause a few problems in that area, usually in the short term. That's the trouble with PN, everyone's pathology can be different, depending on where the neuralgia or entrapment of the nerve is. It's good that your doctor is willing to investigate whether you have PN/E or not, some of us have fought big battles on here to get that far .

Re the colposcopy, I have two friends who've undergone that and both said it was virtually painless and they'd worried such a lot needlessly. Hope you find it the same for you, and also good luck with your nerve conductivity tests. Don't forget to post back and let us know how things go.
Take care,

birdlife, thanks for reply and welcome.

Only if they do some biopsies will there be some pain I'm told by others but that isn't what is really bothering me. It's if they don't find anything.
I'm hoping to have that appt. set up in a few days and will find out more info there. Some Drs. don't have a clue about any of this. I'm trying so hard to be optimistic but after 15 months I'm losing faith.

Hi Jewels,

Welcome and good luck with your procedure tomorrow. If you have pudendal neuralgia it's unlikely the colonoscopy will show anything but at least it can rule out something serious like a tumor in the colon and hopefully it won't cause too much of a pain flare-up. Of course an MRI would be less invasive but maybe you have already had one? If not, you may want to consider having one from one the docs who specializes in looking for pudendal nerve entrapment on an MRI.

The pudendal nerve is one of the nerves that innervates the vulva so you may have come to the right forum. Nerve pain is often felt as burning pain so you have to be a little suspicious of the pudendal nerve in your case. Not sure where you live but one place you may want to start while looking for a diagnosis is to see one of the physical therapists who specializes in treating people with PN/PNE. They would be able to evaluate whether your pelvic floor is in spasm and possibly causing other pelvic muscles to go into spasm and press on the sciatic nerve -- causing your foot problems.

When I first had PNE I thought it was a yeast infection or some other infection but like you, none of the medications helped. I understand how you feel, hoping your test tomorrow will show something. Before I had a diagnosis, when I got the results of my MRI back and they said everything was fine I cried because I wanted it to show cancer or something because at least then you can treat it or you can die and escape the pain. But when you don't have a diagnosis there is no treatment and you just have to suffer in silence. Hang in there -- you will figure this out eventually.

Take care,

Violet

Hi Jewels,
Good luck for tomorrow. You do seem to have a few classic PN symptoms as Violet and birdlife have said but you will soon have an answer on the colonoscopy treatment and can move on from there.
The fact that your doctor is being so proactive for you and better still agrees that it could be PN, is wonderful. That is a major plus straight away.
If you have a look on the home pages here there is a list of physio's and doctors who specialise in treating PN, hopefully there is someone not too far away from you who may be able to help. There is a lot of good stuff in general about the condition there too.
Take care,
Helen