What's next?

Hi all. This is my first time posting and I am just desperate for help. I have had vulvadynia since 2002. It took almost eight years before I was properly diagnosed in 2010. I was put on 100 mg daily of amitriptyline; don't use any scented detergent or dryer sheets; wear white cotton underwear when I am able to wear underwear; don't use soap on the vaginal area, etc., etc. etc.). It worked until January 2018, when the pain came back full force. At that time I had returned to working in an office after working at home since 2010. So, one of my thoughts is that maybe it came back because I sit in an office chair all day (although I try to wear dresses as often as possible with no underwear or loose pants with no underwear). Anyway, the pain is constant and unbearable. I burn so bad and am so tender that I am either just plowing through the days or feel like I'm near tears. My husband and I haven't had sex in months due to this. I went to a highly recommended ob-gyn who is very familiar with the condition (thank God! so many doctors misdiagnosed me with yeast for years). So they have put me on gabapentin, an anti-seizure medication. The doctor told me I had a "extremely profound case," Ugh.) It seemed to be working but now I'm back to square one and the pain is horrific. So, the next step is either the Mona Lisa Touch (a laser treatment used in vaginal plastic surgery) or a vesibulectomy. I dread either one, because no insurance covers the Mona Lisa Touch because it's considered cosmetic and is very expensive, and the idea of surgery to remove vaginal tissue is horrifying. I am lost, in terrible pain and was just wondering if anyone has tried the Mona Lisa or had the surgery and can share their experiences. Thanks so much and my prayers to anybody suffering from this terrible, debilitating condition.

Hi, I am so sorry you are suffering in this way. Like you, I have pain all the time and a ton of tenderness. I have heard from multiple doctors that I have a severe case. It’s so hard to hear this.
I have had surgery, but have not done the Mona Lisa. PM me if you want to talk!

I'm currently using gabapentin but can only use it once a day as I find it strong. My urugyno plans to try valium suppositoris next. My thoughts are with you both. I know this is so difficult.

Hello Sally Jane,

I, as many others of us have suffered with this deliberating condition for coming up to 30 years now and like yourself have tried every possible way of relieving the condition. When I was diagnosed in my thirties, I spent years using creams, visiting various consultants, wearing or not wearing different clothing and on and on and on and I did eventually op for a vulval skin graft, which helped for a short period of time, but I generally believe that was because the nerves had been interfered with initially and it was another consultant, who said that in time all nerve endings regenerate and I did feed this to be true. On a more positive note, I do not feel that any of the attacks I experience now, are as painful or as long and I really do manage to enjoy life. I have been taking gabapentin 700mgs three times a day for quite a number of years now and do find they help and also have had regular injections into the vulval area for pain relief, which also seem to have helped.

One of the things that does seem to make a tremendous difference is the toilet tissue I use and also pads (which unfortunately I now use for slight incontinence), as some of the materials have a high bleach content. I actually mentioned this at the urodynamics clinic and apparently there is a trial being undertaken on the Always pad range, as there have been numerous account of vulval discomfort. It is just a thought, but it may help. I really do feel you need to thing very hard and long with regard to surgery, as it is not always the answer, though we have all felt like just having it taken away and I would definitely try the injections and medication first. With regard to the relationship with your husband, I can so relate to that as well and am aware of how this can have an effect on your own feeling of womanhood, but I used to make my husband appointments and in that way we continued to have a very close, loving relationship, until I was able to resume full sexual intercourse.

Have you tried a total elimination diet?  I finally found relieve (going from about a 7 on the pain scale to 1 to 2) by eating nothing but chicken, a little white rice, carrots and ghee for a week.  After about four days my pain was much better. I then added foods back one at a time and found exactly which foods I can't tolerate and those I can.  I have a limited diet now but I can live without medications and a very low level of pain if I stick to it.  I often wish I could just kill the nerve endings in that area but there doesnt' seem to be a good way to do that.  Sooo sorry you are in such a place.  It is a very hard life.

You cannot sit on a normal chair all day without a lot of pain. You could tell them you have a bad back and ask them to get you a kneeling/kneeler chair? This will take the pressure off your vulva. Argos have one for £59.99. It might make your back ache sometimes so go back to a normal chair and then go back to the kneeling chair. Really sitting all day is not ideal for those of us who suffer from vulvodynia.
I have also used amytriptyline. It worked well for a while. Now I am on gabapentin and that is working. I take 800mg a day. Try going back on amitriptyline for a while. It might work again, then swap back. Have you tried Lyrica?
I sometimes apply a big blob of vaseline...that helps. I also often use De Vere Aloe Vera Gel. It is really soothing. I don't know how I would manage without it.
Hope this helps

My heart hurts when reading your stories. I'm so sorry! I had V for 15 years. I'm cured. No joke. It wasn't by accident.

Please read my blog. I explain everything. Lately, women have been reaching out to me. I've been helping them figure out what's going on (everyone's a little different) and I help them create a plan. That seems to really help their healing process. I love helping others heal and getting rid of the pain. I'm just trying to be the person I wish I had when I was in active pain.

http://myvulvodyniacure.blogspot.com/2016/12/if-you-are-in-pain.html