His and Her Health

I have seen many specialists in the last 4 years for my vestibule pain. It is constant but got better and was even went into complete remission for a year. It came back after a colposcopy with biopsy 2.5 months ago. I had extreme burning when the vinegar and monsels solution was applied, but no pain with the biopsy itself. My vagina was swollen shut for almost 24 hours. The burning has stayed.
In 2004 I went to the Univerisity of MN. where they said I had vulvadynia, and the Mayo Clinic, Rochester where the doctor said I had PN or vestibulitis. I was evaluated by a surgeon who opted not to go with surgery for vestibulitis because I didn't have "characteristic red spots" on the vestibule. It took about a year and a half before I was able to do resume activity. I was finally able to sit 1 year ago.
Other recent specialists believe it is vestibulodynia. I am once again severe pain and cannot sit. I have recently been evaluated by another doctor for a PN. He wants to do steroid injections though the glut. I had intravaginal steroid/lidocaine injections at the Mayo Clinic 4 yrs. ago and had relief for 10 hours. I believe the other intravaginal PN injections done later in Mpls made things worse. Are the one's through the glut different? Do people improve through these?
I don't know which theory to believe and don't want to injure myself further. Opinions have not been consistant.
I have most recently had my pelvic floor evaluated by a doctor(who did a study on Botox) I do not have severe pain in the muscle, though it feels tense a lot; and sometimes burning. I am pain free in the morning or after a nap.

My questions are:
How do doctors decide if it is PN or vestibulynia?
Are PN injections through the glut "experimental?"
Have you seen other patients with this history who cannot sit?
Is there a guideline protocol for diagnosing?


tried - 3 intravaginal injections 2004
protopic 2004
antihistamines, 2004
estrodial 2004
lyrica 2009
zanaflex 2009
topical elavil/baclofan 2009
tricyclic antidepressants 2009
just began topical neurontin

<small>[ 04-07-2009, 05:52 PM: Message edited by: Moderator ]</small>

Hi Anniew,
Although this won't answer your specific questions, I thought it might be helpful to paste this last message Dr. Goldstein left for another person on this forum. I myself did not realize that vestibulodynia can be caused by many different things and that it is not an actual "diagnosis" in itself.

Dr. Goldstein:
"you have to think of VVS (or vestibulodynia as it is now called) as a symptom, not a diagnosis. Basically, vestibulodynia, is "pain at the vestibule." Its like "it hurts to walk, and I went to the doctor and he figured out that it was my knee that hurts." BUT, if you walked out of the doctors office with the diagnosis of KNEE-Odynia, you would think that the doctor stinks- do you have torn cartilage, a torn ligament, arthritis, etc.

Well vestibuolodynia is the same thing. Your vestibuel hurts, but Why- Is it hormonal, tight muscles, too many nerve endings, a dermatologic disorder such as lichen sclerosus or lichen planus, inflammation originating from inside the vagina....

All of these things cause vestibulodynia, AND, obviously, each cause is treated very, very differently.

So you need an exam by someone who really knows what they are doing to answer these questions before deciding on the best treatment."

Although that won't answer your specific questions, it might help a little bit to understand, especially because I was under the impression that vestibulodynia was a diagnosis in itself.

Best of luck.

PN does not just cause pain at the vestibule, it causes generalized vulvar pain that is usually greater on one side.

Is Vestibulodynia levator spasms pinching the pudendal nerve and causing the endings at the vestibule to burn? or what nerve is it that causes the pain at the vestibule

ty

I had bilateral pudendal nerve decompression surgery. My major complaints were burning in the urethra and a burning, pinching sensation on the left side of the labia majora. I felt good in the morning usually and then by the evening I felt terrible. Sitting made the pain worse and or occur. Also, I had to urinate tons and sometimes it burned when I did.
I diagnosed myself....here's what you can try. This may or may not tell you anything. Make yourself a PN suspension cushion. You can sit on two same height books...spread an inch or inch and a half apart so that there is no pressure on the perineum. When I tried that I noticed improvement.
Although now I am dealing with this pesky sacral pain and vestibulitis burning.

Hope this helps:)

I just have the vestibule pain, is that due to the pudendal nerve? or is it another nerve?
Since you had decompression surgery and are experiencing it, it may be a different nerve?
anyone?

I see alot of discussion about excessive nerve endings and vestibulectomies. I may be redundant with this question, but how does one decipher if they have "too many" nerve endings or if the levator muscles are compressing the nerves causing the pain in the vestibule?

DanielleBAN,
You got me. I don't know. I'm so confused. I'm wondering the same things....how do you know if there are too many nerve endings or if the problem stems from elsewhere. Then, I am wondering, is it just still my pudendal nerve acting up or is it another nerve or not a nerve...then why the heck does my tail bone hurt?

I believe Dr G said in a thread that the too many nerve endings were usually determined by process of elimination or could be confirmed by biopsy or immunohistochemistry. I'm not sure how the latter works. Has anyone had a biopsy or been able to confirm too many nerve endings by some other means other than pathology after surgery?

Also from what I gathered from the articles, if you've had pain since first tampon use, first time having sex, it is likely too many nerve endings. I'm not sure that this precludes too many nerve endings in other scenarios though.

I feel like mine is all stemming from my back someway. Not vica versa. I was hoping my email on the botox category would be addressed, as I hate going that route ( who wants to put a toxin in their body) if in fact, the pain is originating from the back(lumbar spine- as mine hurts like hell too) or if the botox doesn't help the surface pain.(vestibule)

I just read the post above from Annie. Its odd as my pain is alleviated in the am or after I take a nap too, whats up with that?

D