clitoral pain, touch pain - PN?

[susibee]

Hi all! This looks like a great forum, although I wish none of us were here, of course.

I'm newly understanding that I likely have pudendal neuralgia. I'm currently in a flare and for the first time in my life experiencing buttock pain and left inner thigh burning. Before now, my pain was always localized to the vulvar area and even more specifically the left labia.

My pain has also never been triggered by sitting before, and now it seems worse with sitting. Well, I have more pain in my buttocks with sitting; it's right under my left sit bone.

What has always triggered my pain (i.e., for the last 10 years) is touch, not intercourse per se, but touching my clitoris and the surrounding parts. Anywhere between 20 mins and a day after being touched, I would have vuvlar burning that would last a few days at its worst. Now, after being touched, I have buttock pain and inner thigh burning, etc., etc. Same trigger, but with much more uncomfortable results.

If the pudendal nerve is trapped further "back," say between the ST and SS ligaments, or in Alock's canal, why does touching the very end of the nerve (i.e., at the skin of the clitoris) trigger a deeper pain in the buttocks?

I ask this question because in the past I have always wondered if the ends of my nerves weren't damaged (maybe from
touching myself as a young person??). I read a post on this forum and have heard of others saying their pain started after clitoral stimulation or having an orgasm -- all superficial, skin stimulation. But now that I'm having deeper pain (buttocks), I'm having trouble understanding what skin stimulation has to do with anything and why.

Anyway, my current approach is to avoid sitting and avoid touch. I have ordered a cushion and a kneeling chair for when I must sit. I'm trying to walk everyday. (I had been sitting a lot over the past several months - more than I ever had before in my life, but I had also been having more sex than I ever had before in my life (new relationship) -- which one was the cause?? The superficial touching or the sitting? I'm confused.) I'm very interested in doing stretches and yoga and pelvic floor PT, but I'm very scared about this too, as I don't want to trigger a flare or make things worse.

I'm hopeful that I will be able to prevent things from getting worse with "no sitting" and will be able to ride out this flare and have my symptoms return to the low level they were last fall.

[Karyn]

Hi Susibee!
What a cute name! Welcome to HOPE! I'm very sorry about your symptoms but am glad you found us. It does sound as though you have PN but I was wondering if you've undergone any diagnostics yet? It's difficult to say whether sitting or more physical activity is causing your flare. Unfortunately, it's not unusual for symptoms to progress, so that may be where you are right now.
For the time being, I would suggest holding off on the stretching and yoga and try to make an appointment with a PT who specializes in pelvic floor dysfunctions. Do you happen to know of any in your area?
Warmest regards,
Karyn

[susibee]

Hi, Karyn!

No, I haven't had any diagnostics yet. I'm just starting to read about Filler's MRN vs. Potter's 3T MRI and all the associated drama/confusion! Haha. I haven't had any nerve blocks or an EMG either. I'm terrified of having a needle stuck in the area. I feel so certain I have PN based on my symptoms, I don't understand why I would want to risk getting worse by having a steroid/anesthetic injection to the area. (My pain isn't bad enough to want the injection for any potential relief.)

Is it possible to get an imaging study done before nerve blocks being done? (I really wonder about the dorsal branch in me because of my specific symptoms.)

I'm not sure where my closest PT with pelvic floor specilialization is. I live in NH, and I have heard about Dr. Conway and his colleagues, who are about 2 hours away from me. I think my closest PTs who specialize in the pelvic floor do stool incontinence work, not really PN work. Do you think it would be worth it to drive all the way to Dr. Conway's center for PT? (Doesn't really jibe with my "no sitting" plan!)

[Karyn]

Hey Susi,
Aaah - another New Englander! No, I don't blame you for not wanting the blocks, but I'm not sure you can avoid them for diagnosis. No, I don't think driving 2 hours to PT would be very helpful to you. Could you get a script for the 3T MRI in NY from whoever is managing your care now? And who would that be?
PCP? GYN? It does sound like Dr. Conway would be closest to you, so he would be a good start as far as a PN doctor is concerned. If I could do it all over again, I'd get the MRI first and then try to negotiate what they'd stick in me and where.
Please let me know if there's anything I can do to help!

[pianogal]

I wouldn't be surprised if it's actually the dorsal nerve to your clitoris which is trapped in some scar tissue. Go to Hollis Potter at Hospital for Special surgery for the 3Tesla MRI (others can't image the nerves even with the same machines and they have financial assistance there). When I went, I found scarring of the dorsal nerve to my clitoris, and my clitoris has never even functioned... but I had a straddle fall when I was 7 years old. I will tell you this, my pains used to be fullblown but died down last year to just labially... and some minor palpation of the lower portion of my vulva/labia provoked fullblown pain throughout my entire nerve region (sit bones, sacrum, vulva, etc)

So one spot can trigger pain along the whole course of the nerve.

The dorsal nerve to the clitoris is a branch offshoot of the pudendal nerve.

Doctors currently releasing it are as follows: Dr. Dellon (super expensive doesn't take insurance) who pioneered and created the dorsal release surgery, Dr. Aszmann (in Vienna Austria) who learned it from Dr. Dellon and is kind enough to reply via emails, Dr. Hibner in Phoenix Arizona who just flew this February to learn the procedure from Dr. Aszmann... he takes insurance, but there's usually an 8 month wait to get in to see him.

Hope this helps, and sorry for your plight... we all know your pain!

[susibee]

Hi pianogal!

Thanks for your response. I, too, had a significant straddle injury; it was when I was a child learning to ride a bike.

Thanks for giving me the list of surgeons who do the dorsal nerve release. What about Dr. Filler? I know he doesn't do surgery, but does he inject at the dorsal nerve?

and some minor palpation of the lower portion of my vulva/labia provoked fullblown pain throughout my entire nerve region (sit bones, sacrum, vulva, etc)

So one spot can trigger pain along the whole course of the nerve.

Can I ask more about that? What was the "minor palpation" from? Was it during physical therapy or sex or something else? And how soon afterwards did the pain everywhere start?

Are your pains still just labial, or was the palpation experience more recent? I hope the former!! What do you think made you pains die down when they did?

I just can't believe my symptoms changed so dramatically. I was having increased vulvar burning for more than a month and decided to go back on nortriptyline for that reason. About two weeks after starting the nortriptyline I was feeling great - no vulvar burning! So, I had sex, and WHAM! I got hit with this - buttock pain, sacral pain, inner thigh burning. The whole shabang from 60 sec. of clitoral stimulation. It's hard to believe.

That was 8 days ago now. I'm still hoping it's going to calm down.

[TracyB7777]

Hope this isn't to nosey but how much Nortriptyline helped ease your symptoms? I take 20mg AM and 30mg PM but it hasn't really helped. Wondering if I should up it (can go to 75 at night doc said) or if I should just ease back off of it. I'm tired of constantly taking pills.

[susibee]

Hi Tracy!

I was only on 20mg of nortriptyline at night when I had no pain 9 days ago. But when I started the nortriptyline, my symptoms were not severe, just my usual vuvlar burning. I also took the medication in 2002 for vulvar burning, and it really helped me then.

Now that my symptoms are more severe (along the course of the nerve), the nortriptyline doesn't seem to be taking them away. I'm up to 40 mg at night, none in the morning. My GYN's advice was to go up to 50-75 mg at night.

I don't know... today is day 9, and I hate to admit it, but I'm losing hope.

[TracyB7777]

Very interesting. I'm wondering if i ease my morning dose towards evening if that would help. I'm not sleeping at night either which really surprised my doc, well that and taking20mg in the am and managing to stay awake. Guess it just has a different effect on each of us.

[susibee]

Just an update. I have had some improvement.

I'm up to 70 mg nightly of nortriptyline, and after about 2 weeks at this dose, I think it is helping quite a bit. Now most of the day I am without significant pain. While things don't feel totally normal (for example, I blot, not wipe, after urinating because things feel so 'touchy'), I don't have actual pain most of the time during the day. At night, my symptoms might develop -- more aching, rather than the burning I was having before.

I am struggling with the side effect of constipation though, so I am waiting to see if I can get beyond that before increasing the nortriptyline dose further.

The other thing that might have helped was finally getting a donut cushion. (I didn't understand what kind of cushion to order, and it's taken me a lot of trial and error to find the right thing.) I can sit with the cushion for as long as I want. I can sit without the cushion too, but I don't want to irritate anything and don't do that. In general, I try to change positions frequently which is a pro-active measure, not one I have to do because of any pain.

I have emailed with Dr. Dellon. I am impressed with his interest in our cases. This is really a late-career interest of his, and I hope he can bring his enormous wealth of nerve surgery experience to the pudendal nerve, with improved outcomes!

Right now, I am holding steady. No PT, no injections (anesthetic or steroid). Just nortriptyline + cushion + walking + changing positions.