Has anyone found relief for vestibulodynia or vulvar vestibulitis?

Hello from Australia,
I have found relief using topical amitriptyline (Endep). I have to apply it daily and after about 5 days, the area is relatively pain free. Unfortunately however, if I discontinue, the pain returns after a couple of days. But the relief is still still welcome!
It was prescribed by a gyno specialist as part of a trial. That was about 5 yrs ago, so I'm not sure where the research has progressed to since.

First off, I am so sorry that you are going through this. I have been there and it is absolutely the worst. Second, as of about 2 months ago I am pain-free! I suffered with Provoked Vestibulodynia (formally known as Vular Vestibulodynia Syndrome) for four years until I switched all my hair and body products to chemical free options and within a few weeks I could have pain-free sex for the first time in my marriage. It has been absolutely life changing. Like you, I discovered my pain on my wedding night. Awful. Now we have pain free sex! Here is a link to the post I read that helped me discover what was wrong:

http://www.experienceproject.com/stories/Have-Vulvar-Vestibulitis-Syndrome/1324024

I also found this one to be helpful:

http://pvdhelp.blogspot.com/2015/03/my-provoked-vestibulodynia-subsided.html?m=1

Don't give up hope! This might work for you too!

Hello out there. I have this too. It is not from birth control pills. I have never been on them. I had heavy yeast treatments in the past, but that's a whole other story. I have lichen schlerosis, early stages, and most gynos say they could not even tell I have it. But what I have now that has been coming on slowly is the painful vestibuldynia, I can't remember whether its unprovoked or provoked. I have asked my doctors how I could get this, I've never had pain before. I'm 53. Probably started when I was 49...very slowly noticed... I don't really feel it unless having sex. I have tried everything....Pelvic PT...did nothing. topical gabapentin, did nothing. Nortatriptiline (my derm said it's very good for nerve issues so I thought I'd try it) Made me feel horrible, exhausted and constapated. STopped after a week. The only thing that I can do is lidocaine, before sex. Sure takes away the spontinaity though, and you have to plan it all out. wait, at least 15 minutes.... I hate it. A new gyno told me to put lidocaine on the area nightly. She said it would calm the nerves down. I didn't like that suggestion. Lidocaine just is temporary. Next we will try gabapentin. or another RX. I'm not a fan of going on medication. If it's going to give me daily side effects, it's not worth it. Anyway, I was seeing a wonderful specialist in Boston, if anyone is interested. Dr. Rasmussen. She is a specialist in vulvar pain. She helped me a lot but I can not commute there becasue it's very far. I am seeing a more local doctor. I live in CT. Anyway, the pain continues, and I think it's getting worse. IT's really put a damper on my sex life. I hope it's not spreading... ugggg,
Jen

I've been dealing with primary provoked vestibulodynia for years. I have yet to have found a treatment that works. I've been documenting my attempts of different treatments on my blog (http://apaininmypelvis.blogspot.ca/). Feel free to come read and share your experiences! I post useful links and articles on vulvodynia and critically analyze all forms of treatments from vestibulectomy's to lidocaine ointment to Botox.

Hi thanks Rosa. Most of those suggestions are for vulvadynia which thankfully I don't have (its normally constant and mine is provoked). I am in physio but it isn't helping with the vestibule. I will be getting injections next. I just wanted to know of the are any other women with provoked pain and if anything besides surgery had worked.

Hi Anon,

Here are some ways to possibly treat Vulvodynia: 

Avoid Potential Irritants

It may help to avoid things that could be irritating the vulva. These might include certain soaps, medications, or douches. Here are a few tips:

• Use dermatologically approved detergent and don’t use fabric softener on panties.
• Use unscented toilet paper that’s soft and white.
• Wear 100% white cotton underwear, menstrual pads, and tampons.
• Avoid getting shampoo on the vulvar area.
• Avoid perfumed creams or soaps, pads or tampons, and contraceptive creams or spermicides.
• Avoid hot tubs or pools with lots of chlorine.
• Rinse the vulva with cool water after urination and intercourse.
• Avoid foods that make urine more irritating. This may include foods such as greens, beans, berries, chocolate, or nuts.
• Wear loose-fitting pants and skirts; don’t wear pantyhose.
• Keep the vulva clean and dry.

Help Ease Pressure

Certain activities put pressure on the vulva.

• Use a water-soluble lubricant during sex.
• Avoid activities that put direct pressure on the vulva. This includes bicycling and horseback riding.
• Sit on a foam rubber doughnut.

Relieve Pain

These steps may help relieve vulvar pain:

• Soak in lukewarm or cool sitz baths.
• After intercourse, apply ice or a frozen gel pack wrapped inside a hand towel. 
• Alternatively, topical heat applied with a heating pad can reduce pain in some women with vulvodynia.
• Try relaxation techniques.

Medications

• Local anesthetics, such as lidocaine
• Topical estrogen creams
• Tricyclic antidepressants
• Anticonvulsants
• Nerve blocks
• Interferon injections

Therapies

• Physical therapy, which involves exercise to strengthen pelvic muscles and lessen muscle spasms
• Biofeedback, which helps you learn to relax vaginal muscles to lessen pain

Surgery

If you have a type of vulvodynia called vulvar vestibulitis syndrome, your doctor may suggest surgery to remove painful tissue, especially if other options have not brought relief.

Please speak to your doctor about Medications and Surgery in your particular situation.

Best,

Rosa