Health Organization for Pudendal Education

Hi Everyone. My name is Jeanne and I'm new here. I have had sharp needle pain (neuralgia or allodynia) constantly now for a little over 2 years with no answers from any professional. With very light touch on the outer upper lips of the labia and mons pubis (both sides on both) I feel sometimes electrical or needles like it's poking out at me. Wearing underwear hurts because I constantly feel a cactus between the fabric and my skin. I have developed bumps (which a gyno dr said was normal bumps, they're just inflamed) that burn if touched or if I try to put any ointment on it. They are located above the opening of my vagina. My MRIs (pelvic and mid spine to tailbone) came out "normal" but I know the hips were not included. I have a history of vaginismus my whole life (still a virgin at age 40 now) so I have had a tense pelvic floor (and most of my body actually). I believe that I have pudendal neuralgia. It's just a guess, but everyday I try to find answers in the internet. I tried gabapentin, lyrica, amitriptyline and cymbalta and the pain was the same. It just made me super drowsy. I am unable to get an internal exam (due to vaginismus) to get looked at more closely. I believe I got this from 3 different possibilities. I was sitting indian style on the floor and a woman I knew was above me on the bed giving me an amateur backrub. But she was drunk and violently (not in a mean way) was pushing my whole body forward in quick pushes and I was almost kissing the carpet and I remember feeling like I was being over stretched. (I wish I could remember where!) It might have been in the most upper inner parts of my thighs. Another possibility was I was using a vibrator often (for a few months) as I was working on inserting dilators to treat vaginismus (to get used to penetration) and needed to be lubricated each session first. I had a very big sharp pain near the clitoris the last time I used it. I also had done a hip stretch during that day or the day before because my right hip was very tense. So about a day or two after the massage, I noticed that the whole mons pubis felt bruised. Then on day 3, it turned into needles and has been that way ever since. I'm afraid to do nerve blocks (my body is so sensitive to inflammation that I feel like it might make things worse and I'm scared of needles). I have tried so many things, but nothing has helped. Also, the clitoral hood is now shut (due to tension? an adhesion?) and I can't lift it up. I was thinking maybe the hood is hugging the clitoris and causing electrical pain around it because of it. Last night, I noticed that my right inner upper thigh was soooo tight, so I was rubbing it and soon after it was like the whole area burned like fire! (like I just caused fibromyalgia or shingles in that spot!) Is that the trigger point? I do plan to work on it more gently. I would love to hear from anyone who has suggestions or knows what my problem could be. This has been devastating (which I know many of you can relate to) and I just want my old body back. I live near Seattle, WA. I have seen many doctors and PT's here, but am open to hearing about anyone you know and like. Thank you.

Jeanne

Welcome Jeanne
l seem to have no overlap of symtoms with you except the general issue of pain. Sorry you aretrying so hard and not getting anywhere. I would suggest searching in the top right box for Seattleto see if there is some posts then you could private message anyone who posted and may get a response in case those folks do not see your reques. Good luck
Janet

Thank you Janet.

Hello Jeanne,

I'm not sure which PT's you've seen in Seattle -- there's a list of PT's trained to treat people with pudendal neuralgia and some of them are in Seattle so maybe you want to check them out. http://www.pudendalhope.info/node/63#WA You could also check out the list of docs on our website at pudendalhope.org.

Violet

Hi Jeanne, and welcome from me too.

I think that Violet's idea about seeing a PN-aware PT is a very good thought, and I would second that.

For what it's worth, I do know that the mons pubis is not normally innervated by the pudendal nerve, that would normally be the ilioinguinal nerve, and I'm pretty sure that particular nerve innervates the upper part of the outer labia majora as well - so one would not expect your pain to be from pudendal neuralgia. I wouldn't worry about that at all, to be honest.

But why, I wonder, might the ilioinguinal nerve be giving you problems? And I wonder what on earth these bumps are? A good PT might be able to give some very useful input here.

(By the way, please don't worry that you might have caused fibromyalgia or shingles, it just doesn't work like that. You can safely dismiss that from your mind. )

Wishing you a better day, Jeanne - and have you tried using ice for the pain? For many of us it is our first and best help.

Hi Jeanne, welcome from me too,

Both suggestions above, PT and ice would be something I would have advised too for you to try. I do think that you would definitely benefit from some pain management therapies however too, including relaxation techniques. I wonder if you can be referred for pain management at all?
If not, there is a lot to learn about it from the internet of course.
I am to be referred for exactly this sort of treatment soon, no appointment date yet but once I do get to find out about what type of thing is offered I will certainly give feedback and let everyone know if it helps me. I am very open to this sort of therapy and I have taken an interest in pain and the brain etc so it will be interesting to see what structured pain management is going to be like.
Hope you find something to help soon.
Take care,
Helen

Thank you Violet, Helen and Calluna,

I did see a PT pelvic floor specialist who is very good and knowledgeable, however the last time I saw her she pressed down on my outer labia lips with her thumbs to spread me open to look and I quickly said that I might get a lot of pain from that and she said that it's fine and to breathe. Well, my pain increased after that from a 4, to like an 8 for weeks and now it's about a 6. I'm not ok with that. I plan to follow the PT exercises that are listed in the book "Heal Pelvic Pain" by Amy Stein. As far as the nerves go, there's also the dorsal nerve which runs down the clitoris I think and it's also attached to the pudendal nerve. But you're right, that other nerve is there too so who knows. I tried ice a long time ago, but the pressure of it on my skin hurt because it feels like a cactus with pressure. The bumps was once diagnosed as "vulvar papillomatosis" by a gyno dr and is normal I guess in some women. I was told that the inflamed nerves just under it makes it burn. But someone just suggested I see a vulvovaginal dermatologist (which I had never heard of) and I will to get a second opinion. They tend to burn more after I urinate because of the acid I think. A week ago I put castor oil on a qtip and put it lightly on the clitoral hood and inner sides of the labia and on the second night of this, it burned a lot so I quickly took a shower. Anything on those bumps irritates it. Sitz baths with just water doesn't irritate it though so that's good. I could swear that after I eat too much sodium, I burn more.

Jeanne

The dermatologist sounds like a good plan altogether. I wondered if aloe vera straight from the fridge might help?
A friend of mine has severe vaginal and clitoral pain and recommends emu oil, she has tried everything else I think and has found this to bring the greatest relief . Just passing the info on as it's not something I have tried or need and I think it may be expensive.
Take care,
Helen

Hi Jeanne

The nerves in my right vulva have been irritated for over two years now - i can relate to the bumpy skin that you mention as the skin of my vulva has changed over time to a roughened appearance and is often reddened.

Urine is my enemy too - i was told to try vaseline by my doctor as a waterproof barrier - i tried it for a while - there seem to be mixed messages on the web about it as it is a petroleum product.It is very cloggy and seemed to dry things out for me - i could feel it on there all the time as well.

I am currently trying Vitamin E oil - having read that it is a good lubricant/waterproofer and may also help nerves underneath. I bought some 400 iu capsules and just use one pin pricked capsule at a time - a bit wasteful as you only need a small amount but the capsules are sterile. I am trying this myself not with any doctors advice but i have read that women have used it down below. It does sting but i am going to keep trying it for a while - using it every now and again not everyday.

I am taking nortriptyline and gabapentin for the pain - i have also recently been given 10% ketamine cream as a trial to use for pain - Would this be an option for you ? - just to say that i haven't used it at all yet as i am not entirely convinced at the moment about using it on the vulva so i can't say if it works and doesn't sting.

Muscle tension followed the nerve irritation for me too.

Hugs

Rosemary x

Oh dear, poor you, telling the PT that her doing that would give you pain, and her saying 'its fine'....! No, not fine at all. That does make me cross....

By the way, with regard to ice, I would only try that on the mons and the upper outer labia where you've got the neuralgia/allodynia. And yes it hurts at first, in fact it makes it worse - brings tears to the eyes and requires gritting of the teeth! - but if you can stick it, then it gets numb, and numb is absolute bliss....

For what it's worth, here's how I see it. It sounds as if you've got several things going on.

First off, you don't have any of the classic symptoms of pudendal neuropathy - at least, I can't identify any from what you tell us.

You have nerve pain in the mons pubis and in the upper part of the outer labia majora. That's the ilioinguinal nerve doing things it shouldn't be doing. It might be related to your hips being overstretched? - the timing would be right. A good PT ought to be able to help you with this.

And then there is the pain from these nasty inflamed bumps, vulvar/vestibular papillomatosis. Do I have it right, these are inside the labia minora? I am wondering - have you had any test done to confirm this diagnosis? - perhaps a biopsy of any sort? This is a very specific condition.

I do think that your seeing a vulvovaginal dermatologist would be an excellent idea. There can be changes in the skin when there is underlying long term nerve damage - many of us have this. What we see is a sort of roughened bumpy surface to the skin - something like goosebumps. And bits can atrophy, such as the labia on the side where there is nerve damage will shrink away and get smaller until there is hardly anything left. But the skin changes from underlying nerve damage do not look like vulvar/vestibular papillomatosis, the appearance is rather different.

Finally, from what you say, there is clitoral pain, and the clitoral hood is stuck. This would seem to indicate that the clitoris is perhaps inflamed or irritated underneath. And wow, that really has to hurt! It would possibly also be irritating the nerve - which would be the dorsal branch of the pudendal nerve.

Are you getting any of the classic pudendal symptoms at all?

But why is the clitoris/hood inflamed in the first place... I'm wondering, you mentioned using a vibrator - maybe rather too much? I'd hope that once the clitoral irritation/inflammation settles down, that the nerve settles down as well. The thing is that once you have one nerve that starts jangling (ilioinguinal) it takes not so much to start another one off.... Anyway no point worrying in advance.

So right now I'd suggest that you yourself don't do anything further with regard to this. Instead I'd suggest a whole weekend of leaving the whole vulva area strictly alone as much as you possibly can, particularly the sore clitoral area and the sore bumpy area. Be as gentle with yourself as you can - clean the area only with warm water and cotton wool, dry with a clean soft cloth or cotton wool, no wiping, just dabbing as softly and gently as you possibly can.

And if it doesn't settle down over the weekend, or at least start to settle down, or if it gets worse, then consult your doctor.

I do hope this helps a bit at least.