Health Organization for Pudendal Education

Hello all
50 yr old female, suffering for 10 yrs now with episodic PGAD (self-diagnosed) and chronic unilateral (left-side) pain in these areas: pelvic, vaginal, labial, groin, clitoral, and inner thigh. All my symptoms including the PGAD occur on the left side only, while the right side of my clitoris is oddly almost completely numb. ????

Symptoms: Soreness and swelling inside my vagina in the area which seems to be the ischial spine. Also, throbbing, tugging, pulsating, and maddening tickling sensations like someone is plucking a guitar string on a nerve or ligament deep inside the left front wall of my vagina and the reverberations send the aching and pulsating to my inner thigh, labia, clitoris. The tingling and pulsating can reverberate thru my entire left side, with even my lips and gums and left foot being affected. Swelling like fluid retention in the left mons pubis and labia Majora and a distinct and painful sensation that my clitoris and vulva are being pulled inside of me from the inside n
The pain and sensations are maddening, sickening, and cause me extreme anxiety when the flare ups are bad. I have all the crazy-making symptoms of PGAD.

All of the pain and sensations are always in the exact same places, always all occur at the same time, and are pretty much always there the only thing that changes is the intensity. I can always sense where it is even if not flaring badly. I could draw a map of the pain, it is always exactly in the same place. It’s a sensation like a tight band that connects on one end to left labia Majora and clitoris and the other end deep inside my vaginal wall. Most days it’s an annoyance but when it gets triggered and flares I am essentially bedridden for hours or days. Flare ups happen at least 3 times per month and last 8 hrs to several days at a time.

The flares come on spontaneously unprovoked as well as provoked (stress, pressure or even light touch to the pubic, suprapubic and groin area, orgasm, sex without orgasm, and even when just thinking that sex with might be imminent can trigger a flare Intercourse itself is uncomfortable but not painful , but orgasm really sets things off. Orgasm is possible but so difficult now and scary because of all the weird pain sensations that follow and of course the PGAD...OMG the PGAD. oh yeah, one more thing, after orgasm I feel kinda numb in my left cheek for a few minutes (facial cheek that is ) and it feels like it is all tied in with the left sided pelvic symptoms.

I have urinary frequency, but also have trouble with hesitation and minor retention , because when things get bad my pelvic floor tenses up like a vice grip.

I have no burning.
I have constipation but no apparent intestinal, anal or rectal pain. No pain with bowel movements , nor do my flare ups seem to be tied to times when I am “backed up” Symptoms are unchanged whether I sit, walk, or stand. Sitting is no more painful than walking or standing. Walking doesn’t trigger a flare but walking doesn’t seem to help and may hurt once it is flaring. Lying down does not relieve the symptoms. I just go to bed if I can til the flare passes because I am so out of sorts from the pain and other weird sensations. Sometimes it makes me nauseous.It was so bad one night in the middle of the night years ago that I went to the ER and they gave me a CT scan and morphine. It didn’t help at all.

What’s been ruled out: endometriosis, vulvar vestibulitis and other skin issues, interstitial cystitis, fibroids, and hormone issues, and Maybe ruled some out other things that I don’t remember right now. Colonoscopy, vaginal ultrasound , pelvic / abdominal Ultrasounds and MRI and CT all negative for whatever they were looking for. I don’t think they were looking for PN.

So far my gynecologist has not taken the lead on figuring out what’s going on even after all these years. Per my own research we’ve just been treating as if it is pelvic floor dysfunction spasms but I’ve long suspected that something else is going on. Hernia ? PN? No idea. Doctor has no ideas.
Treatments I take are the usual PFD stuff: muscle relaxer, Tylenol with codeine, ibuprofen, Naproxen,lidocaine patches, stretching , relaxation, heating pad, cold packs, and vaginal suppositories compounded with Valium, baclofen, and lidocaine. But none of those things give me any relief really so I rarely use them. The most I can usually hope for is that the muscle relaxer puts me to sleep for the night and that I awake in the morning with less pain.

Any thoughts or input on my situation are most appreciated thank you!
Mari

PS Just found out today that there is At last a pelvic floor doctor and therapist in my area. So I am scheduled to see her next week for pelvic floor assessment. What should i expect at a first visit ? Any specific questions I should ask?

Hi Mari,

Welcome to forum. It does sound like pn to me. The only unusual thing is the lack of burning. That is a common feature of nerve pain. You said your doctor was treating it like pelvic floor dysfunction. Did s/he give you pelvic floor exercises to do (a common way to do treat pelvic floor dysfunction). If so, I think I'd stop until you figure out what's going on. What did the new doctor think? I don't think you mentioned seeing a physical therapist. That's a common first line of treatment that you could consider. You need to find one who does pelvic floor therapy and, ideally, is knowledgeable about pn.

April

Hello April thank you so much for the response!
I guess what I meant to say was that my GYN has has just been treating my symptoms as pelvic spasms and prescribed some meds. No exercises.

I have been in a huge flare for the past month, probably the worst and longest lasting flare I’ve ever had. I’ve noticed my symptoms are lower and sometimes not very bothersome at all when I am standing and moving around. Sitting is not painful, but I always have at least an awareness of the symptoms when I’m sitting and I have to be careful not to put pressure on the left vulva or clitoris otherwise it will start the cascade of symptoms.
But lying down is the worst. For example, Yesterday I was on my feet all day long and I Had a very good day. Yet as soon as I went to bed immediately my vulva and clitoris started aching throbbing and I was up for hours even after taking pain Med, suppository, and applying the lidocaine.

So I have been seeing a pelvic floor therapist, I think I’ve had 4 visits now. She suspects nerve involvement. I’ve been doing biofeedback. Tried some Kegels but that seems to aggravate my symptoms so not doing those anymore. She says my pelvic floor is actually pretty weak but higher up in my vagina and pelvis it is very tense and non-relaxing. The left bulbospongiosus muscle is very contracted and swollen. There is a painful band of connective tissue that can be felt beneath the skin along the left side of perineum from clitoris on back to the anus. Also another painful thick band of connective tissue in my vagina, hard to describe but can feel it internally around the 4 o’clock position. We’ve worked on breathing and relaxation techniques and she’s done some internal and external work on me but so far no improvements. She’s referring me to a urogynecologist so we’ll see how it goes from here!

I have had 5 visits now with pelvic floor therapist with no improvement. The therapist is great, knowledgeable on all things related to female pelvic pain including pudendal nerve and PGAD, , and has gone above and beyond to research possible causes and solutions but I’ve had no improvement. We’ve tried biofeedback, stretching, internal and external work, breathing and relaxation techniques, TENs. No luck.
She’s referred me to a Urogynecololgist at a teaching hospital next week. I’ll update after my appointment.

My pelvic floor therapist referred me to a urogynecologist and I had my first appt today. The Urogyn did a thorough exam and suspects nerve involvement but says the same as the PT , that my pelvic pain and pgad symptoms may not be due to the pudendal nerve but possibly the ilioinguinal nerve with referred pain into the vulva and clitoris. She suggested nerve blocks, ilioinguinal first and then maybe pudendal later. And she prescribed amitriptyline and 5 % lidocaine gel to hopefully help me through this flare. She wants to see my reports from my previous mris, xrays, and ultrasounds thatI had previously, and may order mri to look for Tarlov cysts.
While I am not crazy about the side effect profile of amitriptyline, I am willing to try it for a month or two and see how it goes because I am desperate for some relief from the symptoms.
But I am kicking myself because I kind of froze up when the Urogyn asked if I had any questions about the nerve blocks. I need to do some more research and then I think I can email her my questions.
Input would be most welcome if anyone is here ?

Hi Mari,

Sorry for the late response. The kegels are bad for pn, so it's good that you've discontinued that. Interesting that the doctor thought it was the ilioinguinal rather than the pudendal nerve. I don't know much about that nerve, but your increase in pain when you lie down is atypical for pn. I wonder if it's more common for problems with the ilioinguinal nerve. Yes, a diagnostic nerve block makes a lot of sense. The block sends a numbing agent toward the nerve suspected of causing the pain, in this case the ilioinguinal, and if your pain declines, it is considered diagnostic of neuralgia with that nerve. The blocks (at least pn blocks) normally include a steroid, with the hope that the steroid will reduce the pain, but for many people it does not. In fact, it creates a flare for some (maybe most) people, so you can request it without the steroid. So, if you wanted to ask questions, you could ask if it will have a steroid and what the odds are that the steroid would actually be therapeutic and if you can do it without the steroid.

The meds sound like a good decision given how much you've been suffering. I think amitriptyline is a good option, and topical lidocaine has no real side effects.

Let us know how the block goes.

April

Just a quick note on my progress— UroGyn prescribed 10 mg amitriptyline back in February and it has been surprisingly effective, reducing my pain and PGAD symptoms fairly quickly by about 50%! I have had more good than bad days lately. My symptoms while not fully resolved are manageable right now , so at this point I am no longer considering the nerve blocks. Will give more thorough update later.