After having my pelvic PT last week, my PT therapist discovered I had red raw swollen skin. She has referred me to a specialist who handles Vulvodynia exclusively. I'm hoping she can find methods of reducing the pain and and treating it. I see a regular Gyn first to check the skin and see what can be done to treat it before I see the specialist. Please wish me good results. The pain has been bad for a long time now. I'm running out of tolerance.... and getting increasingly depressed. I'm praying there are REAL answers to this problem. Regular doctors have no idea how to treat it. Thanks in advance.
Good luck Debi!
Hi Debi, I really sympathise with you. It's just awful having to go through this. I spent all afternoon crying today, as I really felt it will never go. I had felt quite up a few days ago, but I have been on too many websites I think, reading about people that have had this for years and nothing makes it go. I had 2 good days over the weekend but today was bad again. Are you on tablets too?
Linda, if you are determined you can be cured. My dermatology consultant who specialised in vulva pain and ran a vulva pain clinic, so had seen hundreds of women with such pain said that the ones who don’t get better are the ones who don’t stick at it - they get impatient, give in and go for a gym session or have sex and they set themselves right back to square one. It is absolutely imperative that you do not do anything to aggravate the nerves while you are doing whatever you have found to help relieve the pain. Stick with what helps you and don’t give in. I had such a setback. I didn’t give in as such, but when I was mostly better and in what I would describe more as discomfort rather than pain I finally went for my Pap smear. I had already delayed it for a year or so. I was worried because I’d had a scare before with abnormal cervical cells. But that speculum put me right back to square one. I was so devastated. All that time working towards being pain free wasted! But I knew I could get better because I nearly had already. So I just continued with the treatments that worked for me and hoped I’d be completely better before my next smear test.
Thanks for your support Suki. Did your consultant see lots of women that had been cured of it completely? I am not so much impatient but more depressed, as I keep reading that it's very difficult to get rid of if at all. I am trying so hard, but getting very upset that I can't live a full life. Did you get good and bad days, did the good days gradually get more and more frequent? Are we talking about weeks here of pain or months or hopefully not, years? I think what worries me too is the lack of activity, what it is doing to my stamina and muscles as doing nothing but lying around all day. Why do the nerves take so long to settle down, it's hard to understand as I can think of nothing at all that even started it in the first place. Does everyone else feel as hopeless as I do? I so want to be positive which will probably be better for the condition anyway, but it's just so hard. I really thought the cream was helping, and now I don't know if to continue using or not? I am not sure how much to go up to with the Nortriptyline either as my GP said up to 20mg but my consultant gynaecologist said continue until necessary.
Hi Linda, yes my consultant dermatologist had seen many women who had been cured - the ones that were determined, did nothing to aggravate the nerves and tried everything. The minimum time to be pain free, she had found, was around 1.5 years. I was pain free after 1.5 years but still had some pain after intercourse which lasted a couple of days. So, I could say it took me around 2 years to be fully pain free. My pain was continuous originally, getting worse throughout the day and if provoked, but with the multiple treatments (50mg amitriptyline, yoga, pelvic floor exercises, manual desensitisation, acupuncture, saginil gel) it gradually reduced to be more manageable, then to discomfort not pain, then only soreness after intercourse. As time progressed I noticed that even if I did something to aggravate the nerves recovery time to the base level of pain was shorter. Acupuncture was particularly effective for me - after each session there was a jump in the progression to being pain free. You can see my full story in my post “how I cured my vulvodynia”. Other women have posted their success stories on there. Like you, I was very depressed at first, lay in bed most of the day, spent a lot of time crying and trying to figure out what had caused it. But at some point you have got to say “this is enough, I refuse to spend the rest of my life like this”. Another word of advice - stop reading the horror stories in the internet and concentrate on getting yourself better.
Hi i was wondering how does the vulvodynia feel like? I have pains in my vag sometimes not inside but around and also my side of the lip d0wn there aches 
idk if i have vulvodynia or not cuz obgyn didnt see anything. Nothing abnormal and she thinks its anxiety
Hi Erica, just to say, my Vulvadynia feels like cystitis would be at times, deep inside. Other times it can feel like burning sensation all around, and also on lips, sometimes too in back passage, I guess everywhere there are nerves. Sometimes the pain goes to be replaced with a dragging sensation and uncomfortable feeling, similar to if you have used a tampon and got it in wrong. My gynaecologist could see nothing abnormal, there wouldn't be anything to see anyway with Vulvadynia. But she did diagnose Vulvadynia. I don't know what started it,bit began overnight almost on 22 November. I also wonder if it anxiety or stress related. I am having counselling too for anxiety.
MIne felt like a burning, searing pain. Some people describe it like having a cut there and salt or chilli being rubbed into it. As it got less it was more like sore, then tingling.
Not many ob/gyn can catch vulvo dynia... I'd get another opinion if you can. It takes months of repeated exams for Gyns to catch it. Mine went on for 4 years before it was diagnosed! Don't wait that long! Yes vulvodynia can just affect the labia only. Try Aspercream with Lidocaine... or Recticare... (bowel aid aisle). and try ice packs... And yes stop reading all the horror stories. Some people like to tell them. Lord knows why. It's like pregnant women sometimes tell the worst stories that scare pregnant women half to death. You can also look at NVA for advice. They have lots of articles, newsletters, its worth it. They have a whole video of vulvodynia. I have pain in vulva and vag. it's like an aching and sometimes a throbbing. Ice packs help it the most. Laying down helps a lot. I also take Cymbalta, Amitriptyline, and Gabapentin. They all work together. Keep seeing doctors if you can to find the right one for you. Look up vulvodynia specialists in your area. Also the NVA has a list of vulvodynia specialists by state... Best wishes Erika.
Hi Suki, thanks so much for your pep talk, did me good, I am taking your advice (and that of my friend and husband) not to read any more horror stories on the Internet. It looks as if I am looking at another 15 months of this then, which doesn't make me feel good, but if there is an end eventually then I shall keep going. I was fine this morning, but this afternoon back came the stinging pain, your description of it feeling like salt rubbed into a wound is very exact. It's strange how sometimes it's mostly on one side and others around the anul area. I am hoping to try all you have done, taking the Nortriptyline, not sure about yoga as couldn't get out to do that right now, but I have contacted a local female acupuncturist today to enquire if she can help at all. I am trying the manual desensitisation myself to teach the area to not expect pain from touch. I haven't thought about the Saginil gel yet, I will look into that too. It's so good to hear your progress from laying in bed all day crying to eventually beating it. Thank you so much, you are helping more than you realise
Dear Linda,
you do not have to go out to do yoga, just do it at home. I did the happy baby pose and the knees-to-chest pose (apanasana) which are good for relaxing the pelvis and freeing up the pelvic nerves. I did these before and after my pelvic floor exercises which I got from the book “seven steps to pain free sex” by Claudia Amherd. I did these every day at home.
Hi Suki, found those 2 yoga poses on u tube, and did them both this morning, will do then every day now. I have had tingling sensation inside this morning, is that a good sign.
Not sure about it being a good sign. But it definitely means it is nerve related.
Did you just have pain, or find you get the horrible uncomfortable feeling inside, not painful but more like a sort of full feeling, like when a tampin inserted wrongly, I get that a lot more now than the stinging pain.
Sorry, I can’t really remember specifics. I just know thatbat the time I had a burning, searing pain posterior to the vagainal opening (forchette and perineal skin).
Thanks Suki. I don't expect you really want to remember it either,ni know I wouldn't. I am a little worried about the discomfort though. The pain I can understand would be nerve damage, but I am wondering if the discomfort could be something wrong inside, perhaps something like excess skin, or where through vaginal atrophy the internal skin has stretched or drooped somehow, causing a dropping sensation. If I lift inside, as in doing pelvic exercise, it momentarily disappears but when I release it is there again. Very strange!
Hum. Has anyone (medical) had a look inside recently?
Actually, that first thing I’d do is pop a finger inside and see if I can feel anything unusual.
I had an examination by my gynaecologist couple weeks ago, she said all seemed normal, but I wonder if they would notice if skin was loose, or dragging, would imagine they would have to look inside with a camera for that, I wouldn't know myself what is normal or not.