Anyone else have Vulvodynia?

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Date Joined Nov 2008
Total Posts : 5948
   Posted 5/22/2010 8:09 PM (GMT -7)   
sad  I asked this question on another post, but it probably should have its own: does anyone else suffer from this?  I only recently realized that it's one of the symptoms listed on fibro101.  Not easy to talk about - or to live with.
    Diagnosed: Fibromyalgia, possible Meniere's, elevated liver enzymes, skin grafting on back, arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraine headaches, tachycardia, skin cancer surgeries on face
    Meds: Nortriptyline, Clonazepam, Darvocet as needed
    Multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
    Chiropractic adjustments
Be yourself.  Everyone else is already taken.

Veteran Member

Date Joined Jan 2005
Total Posts : 9090
   Posted 5/23/2010 8:15 AM (GMT -7)   
Hi Achey....

Somewhere in these foggy cobwebs I call a brain I remembered this topic coming up before so out I went on a search. Below are links I found to the topic. I don't have experience with this but there are others who do suffer. I'm sure others will come by and share their experiences. In the mean time here are some older threads that might help...

Gravitation is not responsible for people falling in love.
Albert Einstein

(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.

Regular Member

Date Joined Oct 2009
Total Posts : 434
   Posted 5/23/2010 10:19 AM (GMT -7)   
I have mentioned this on several Dr. visits (gyno).  Dr. won't go along with this.  Only more invasive testing where nothing new shows up and says my symptoms are from endometriosis and a uterine fibroid.  I no longer even mention this and just live with vulvodynia symptoms.  I have read up on this and think I may have this also, but as I have said can't get an actual diagnosis.  I think alot of women deal with this. 

Regular Member

Date Joined Nov 2009
Total Posts : 23
   Posted 5/23/2010 12:44 PM (GMT -7)   
I was diagnosed with vulvodynia in 1991 but have been able to keep it under control with low doses of amitriptyline. Such that I don't even have pain, irritation etc anymore. It actually went away for many years and then resurfaced last year when I became very ill again. I thank God that amitriptyline works for me because it can be very taxing on a woman who suffers from this.
I'm sorry that you can't get a diagnosis Libby08. I know how painful and frustrating this can be. Have you tried to get another opinion? It is a very real condition and  hope you are able to find a doctor that will listen to you and help you get some relief soon. You shouldn't have to just "deal" with it if you are able to find something that could help you.

Post Edited (Angels777) : 5/23/2010 1:54:30 PM (GMT-6)

Regular Member

Date Joined Mar 2010
Total Posts : 90
   Posted 5/23/2010 2:55 PM (GMT -7)   
Hi Acheybody,
I was diagnosed with both Generalized Vulvodynia and Vulvar vestibulitis last year.  The beginning of this year I went through I series of injections (unpleasant but helped a great deal) and I use Clobetasol periodically and lidocaine ointment for pain.  Whenever possible I go without underwear and wear loose clothing around that area.  There are some great sites and an especially wonderful one for Vulvar Vestibulitis in particular  that my friend has created (which is more specifically around the glands, but a lot of the self help is the same) and I would love to give the site to you if you send me a message.
It's frustrating, painful and hard for partners to understand, but there is alot you can do to make things easier on yourself - a special cushion for example - physical therapy with biofeedback to relax pelvic floor muscles, plain soaps and cotton undies - no pantyhose.  For me the injections, clobetasol and lidocaine did wonders.  Also low dose valium really helps relax my pelvic floor muscles, but each person finds things that work for them.  If you'd ever like to ask any questions or talk, feel free to email me.  My urologists agreed I may have it when I brought it up to them and was officially diagnosed immediately by my gyno once I made the appointment about it.
If you're having a rough time with doctors, you have to keep fighting and trying - you know your body better than they do :)
Also, knowledge is power!  goodluck

Forum Moderator

Date Joined Nov 2008
Total Posts : 5948
   Posted 5/23/2010 3:26 PM (GMT -7)   
Thank you all so much . . . now I have somewhere to start! :)
    Diagnosed: Fibromyalgia, possible Meniere's, elevated liver enzymes, skin grafting on back, arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraine headaches, tachycardia, skin cancer surgeries on face
    Meds: Nortriptyline, Clonazepam, Darvocet as needed
    Multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
    Chiropractic adjustments
Be yourself.  Everyone else is already taken.

New Member

Date Joined Dec 2010
Total Posts : 5
   Posted 12/30/2010 3:31 AM (GMT -7)   
Pennstate, how is it possible to send you a message?
Sorry im new here and would love to get some answers.
been diagnosed with VV


Regular Member

Date Joined Oct 2010
Total Posts : 114
   Posted 12/30/2010 7:10 PM (GMT -7)   
I'm pretty sure I have this but have not been diagnosed with it. I have an appointment with my gyne on Monday so will be investigating that issue. It is one of the worst things to deal with, not only the pain but the psychological part of it. Mine comes and goes so really never know how it's going to go. I feel for you. I actually posted on here about the same issue not long ago thinking I have Dysphrenia (or something like) which I think are the same are similiar symptoms. I have to read up on it more again because I can't think right now due to the "fibro fog". I'll let you know my outcome. On top of that I'm thinking I might be going into early menopause at 37 too. Life is so hard for us all isn't it? If it's not one thing, it's another!
Fibro, Diabetes, Cubital Tunnel, Chronic Fatigue, Depression and Anxiety



Free Spirit
Regular Member

Date Joined Nov 2010
Total Posts : 190
   Posted 12/30/2010 11:10 PM (GMT -7)   
Hi Ladies,

Here is the link to the Mayo Clinic on this condition. They offer a ton of information.

Free Spirit

Regular Member

Date Joined Jan 2012
Total Posts : 108
   Posted 1/4/2012 3:01 PM (GMT -7)   
Hi everyone,
I have vulvodynia and I`d love to talk to some other people going through similar things. My email is, please feel free to contact me. I have been diagnosed with vulvodynia but am not sure if it is more vulvar vestibitus (sorry, unsure of the spelling) or even both. I don`t have a run of the mill case though, I don`t have pain with contact to the area or sex etc (the doctor at the vulvar disorders clinic I went to was amazed). I just have pain which is constant, although it comes and goes with medication. It is more the feeling of a toothache, a really dull, intense pain, but it started out as spasms and sometimes still is like that. Also sometimes I get the feeling that a knife is inside me scraping the area but it`s not a stabbing pain. I have tried many medications and not many were helpful. I had a little success with xylocaine gel but it didn`t last for long, I had to keep re-applying and after awhile it stopped working. Valium worked for a couple of months and then didn`t work any more. I found marijuana worked pretty well and I used it as a substitute when I was trialling the medications and they weren`t giving me enough relief. Now I take oxycontin 20 mg 2 x a day and oxynorm 5 mg 1-4 a day depending on the pain. I am worried though as I`ve just gone to see a new pain specialist who says that in the future she will get me to try Lyrica instead of oxycontin. I know it may work for some people but I don`t want to try it, I don`t have any side effects and this medication works 85% of the time. I don`t have the energy to go through side effects and waiting for a new medication to work, I really don`t want to have to take sick days etc because I`m waiting for it to work and suffering, it`s a don`t fix what isn`t broken situation in my eyes. Sorry to ramble! But good to find some other people in the same situation. I hope you`re doing ok and please contact me if you want to chat. Love Di

New Member

Date Joined Jun 2012
Total Posts : 2
   Posted 6/3/2012 6:29 AM (GMT -7)   
I've had this condition for over a year and can sympathize with those who are desperate for a solution. There is one! Go to to ask Dr. Goldstein who can treat in your area. He contributed to a book on the topic: Heal Pelvic Pain, by Amy Stein, M.P.T. The book includes internal pelvic massage--sounded strange when I first heard of it, but it works, and daily exercises which you MUST do--don't worry, when you find relief you'll want to do them. I went to Dr. Goldstein who confirmed the diagnosis (vestibulities/vulvadynia) and prescribed a compunded estradiol/testosterone gel. I can now sit/live without pain. It's not gone completely, but I can function "like normal people" again. I will copy and post again to the young woman who posted in 2009 looking for a solution --I hope she's found help since then. All the best to you.

New Member

Date Joined Nov 2013
Total Posts : 1
   Posted 11/11/2013 2:35 PM (GMT -7)   
@ pennstate71 how are you feeling now ????????????????

Forum Moderator

Date Joined Nov 2008
Total Posts : 5948
   Posted 11/11/2013 4:31 PM (GMT -7)   
Hi, Maryjane. Welcome!

This is a really old thread, and some of the people who posted may not even be around anymore (I'm not sure about Pennstate 71.) We lock them when they get this old, so I'm going to do that.

Feel free to begin a new thread, introducing yourself, so we can get to know you. We're here to help!

Moderator, Fibromyalgia Forum

Fibromyalgia, herniated disc L4-5, (recent discectomy), DDD, frozen shoulder(s?) Hashimoto's thyroiditis, IBS, migraines, visual disturbances, tachycardia, hearing loss (probably Menieres,) balance issues, chemical sensitivities.
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