VVS and PN

[senoz1]

Hello everyone, I was diagnosed with localized vulvodynia in August and had vestibulectomy due to my amount of pain. My pain didn't go away entirely, but the pain inside my vagina decreased. Now after my MRN report, my doctor directed me to another doctor who can give me steroid injection. I'll go to her on the 20th, but I'm very worried that if PN isn't treated vestibulitis might come back. Those two pain together makes me want to kill myself and nothing helps. Anyone have any ideas?

[stephanies]

If your vulvar pain is coming from the pudendal nerve, it would make sense that a vestibulectomy might not reduce your pain significantly or that the pain would come back over time. Do you have any other symptoms of PN or is vulvar pain your only one? Is the steroid injection going to be into the vulvar tissue directly or in the form of a nerve block? What kind if doctor are you seeing for the injection? It can take some time to get everything sorted out when you are dealing with pain, hopefully you will get more information at your next appointment.

Sincerely,
Stephanies

[senoz1]

Hello again, thanks for your response.

My doctor said that my pudendal nerve caused vestibulitis, and that the problematic pudendal nerve affected everywhere near including nerves in vestibule. It was very painful and still is, only the pain right inside my vagina decreased. I asked him if that can happen, he said that he cut the problematic tissue, and it's not very likely. But I don't really know what to think, and am very veeeery afraid that VVS will start again.
My MRN report writes that I have a thicker and more intense left pudendal nerve, and doctors (radiologist, gynecologist) think that that's the reason causing me this much pain. I mean I don't have a life anymore and don't know what to believe or do. I'm 23, and I try to deal with all this but it's very hard.

My doctor directed me to another pain doctor who will inject steroids, and I don't know any other detail. It really is hard to get all answers at once. It feels like the doctors don't really know what step to take.

[stephanies]

When I began to have pain, my local obgyn first diagnosed vvs as well. When I saw a pelvic pain specialist, he said if the pain is coming from the nerve trunk, rather than the nerve endings (which I think is vvs) then a vestibulectomy would not do much good. Have you had an evaluation by a pelvic floor physical therapist? If not, you can probably ask your obgyn for a referral. A good one can help you figure out the source of your pain and check your pelvic muscles. You could also see a pain management doctor about some medication that can help bring down your pain while you are looking for answers. I agree with some of the other posters that you should definitely not have another surgery until you get more information. Are the steroid injections with a pelvic doctor of any kind? Does he/she have pelvic pain experience? I am sorry you are going through so much pain so young.

Stephanies

[Violet M]

The pudendal nerve innervates the vulva and the lower 1/3 of the vagina so maybe a pudendal nerve block would help your symptoms and help you confirm a diagnosis. It's impossible to predict for sure whether it will help unless you try it but you just need to go into it knowing there is a slight risk of getting worse. It would not make sense to kill yourself when you haven't tried all of your options though, right? And you still have many options.

Violet

[michellek]

I'm posting this to hopefully help women who are not sure if they have VVS or PNE:

I've suffered with vulvodynia/ VVS for ten years. I broke my coccyx horribly in 2006 and started a birth control, Yasmin within the same year. It took a VERY long time to discover that the coccyx injury and birth control combined are most likely the culprits of my pain (too long of a story to relay here, now). That's not to say that I didn't seek out all kinds of treatment. I did.. it has completely consumed my life for the last ten years. Blah blah blah.. I'm so sick of it.
Here's my point: It has been suggested to me in the past by various GYN's and physical therapists that perhaps the pudendal nerve is involved in the pain because the pudendal nerve feeds into the vulva area. Yes, It Does, but not exclusively.

The pudendal nerve stems from the sacrum, above the coccyx, and branches off into three parts: one leading to the clitoris in a female, one leading to the Labia, one leading to the perianal area. This is critical to understand. It leads to the entire labia... not just one isolated area like the vestibule.

If you look at the female anatomy, the vestibule is only one small, inner part of the labia. If even just the one branch of the pudendal nerve were entrapped or irritated, I would experience pain through the entire labia. If there's anyone out there reading this site.. this is something to really consider before you let a neurologist tell you you have PNE.

If you can find a dr. who can help you narrow down where EXACTLY your pain is located, this may clear up a lot of confusion. Dr. Irwin Goldstein (in San Diego, not Andrew Goldstein in DC) pointed this out to me. He was able to numb the entire vestibule (the hormonally mediated portion of the labia) and take away my pain entirely. This means that the PN is mostly likely NOT involved.

I may still seek out a Neurologist to confirm this theory... but it makes a hell of a lot of sense. And Neurologists do not understand the female anatomy. These issues are incredibly complex and I've agonized over the lack of understanding between different branches of medicine.

The reason these GYN's etc think that the pudendal nerve is related is because it does feed into the vulva area. Meaning, if you do a pudendal block and find that for the first few hours after the injection, the pelvic floor area is numb, that means they found the right nerve. That does NOT mean, that the pudendal nerve is necessarily involved in the creation of your pain. That also means that if you hook a woman's pudendal nerve up to a stem current (one of those internal tens units.. I forget what they're called), she may very well see relief in her vulva pain. That still does NOT mean, that the pudendal nerve is necessarily involved in the creation of the vulva pain. The pudendal nerve, in those situations, acts more as a highway for delivering relief.

[Buttercup28]

Senoz1,

I understand how distraught you are. You need to see a pelvic floor PT because I'm sure your muscles are involved as well. Also, it's good you are getting an injection to see if that helps in any way. The steroid will help to bring down levels of inflammation in your nerves. I think I have lost count now on the amount of injections I have had into different areas of my pelvis (whether they be internal or external injections), but likely at least 50 or more and I do find that they definitely help. So keep that in mind, that you can always continue getting injections (you can avoid steroid injections for the long-term and just opt for anesthetic-only injections and these are perfectly safe) for as long as you need to get them.

Also, do you have any way of getting into a pool to swim or to just walk through the water? I always found the pool water very helpful for burning/tingling.

~ Buttercup

[Buttercup28]

Hi MichelleK,

Are you saying that it's the nerves that sit inside and around the muscles/connective tissue (nerves along the muscles spindles) that are really causing the problem then instead of the pudendal nerve specifically? One of my theories is that the muscles/connective tissue get so tight and constricted that they start to strangle themselves allowing no blood flow, lymph fluids or oxygen in or out which causes the nerves to fire and burn because they are being starved for oxygen, blood flow, and removal of toxins through lymph.

Thanks,

Buttercup

[Holly]

My pain began suddenly in 2014. None of the GP's I saw had a clue what it was - just left sided, just the labia, probably just the size of a medium coin in extent so not even one side, about one third of one side. It took a further two years to be diagnosed with PN.

Since then I have often wondered if the pain was as a result of removing a molluscum contagiosum spot which I think I had done about a month before the onset of the pain. This was painful but healed before the pain started but it was in the precise region of my pain now.

My pain feels as though it is in the nerve endings only but I have always been assured by PN doctors that it has to be damage to the nerve at some point between the labia and the base of the spine. I feel the pain in this small area but this is coincidental. I raised the theory of the spot on the labia possibly being the cause of the pain but was told by a consultant that this was highly unlikely. That's not the way labia pain starts.

I have all the signs of PN - can't sit, can't wear underwear or trousers, relief when I lie down. Perhaps it is still PN albeit a very contained case?

Hx

[mary jane]

My pain began suddenly in 2014. None of the GP's I saw had a clue what it was - just left sided, just the labia, probably just the size of a medium coin in extent so not even one side, about one third of one side. It took a further two years to be diagnosed with PN.

Since then I have often wondered if the pain was as a result of removing a molluscum contagiosum spot which I think I had done about a month before the onset of the pain. This was painful but healed before the pain started but it was in the precise region of my pain now.

My pain feels as though it is in the nerve endings only but I have always been assured by PN doctors that it has to be damage to the nerve at some point between the labia and the base of the spine. I feel the pain in this small area but this is coincidental. I raised the theory of the spot on the labia possibly being the cause of the pain but was told by a consultant that this was highly unlikely. That's not the way labia pain starts.

I have all the signs of PN - can't sit, can't wear underwear or trousers, relief when I lie down. Perhaps it is still PN albeit a very contained case?

Hx

Interesting, and how do the Doctors know it's PN and not vulvodynia?