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Vulvar Vestibulitis. My story and what works for me.

Hey everyone! I figured I'd tell a little bit about my story for other people who have vv or think they might.

Ever since first having intercourse on my wedding night, it always hurt to have sex... sometimes worse than others. I thought the pain would go away since I was a virgin before that. But after a few months it didn't so I asked the gynecologist who said to relax and to "keep trying" and that I would "get used to it." So I took her advice and we had lots of painful intercourse. Always a bad idea. Eventually it got too painful to have sex at all so we stopped altogether. I eventually went back to the doctor (after a year of marriage) and was diagnosed with vaginismus. I think that at that point I had developed vaginismus as a conditioned response to all of the painful intercourse. So I did a month of physical therapy three times a week (I do not recommend doing it all this close together! There is no time to heal in between but I was impatient.) But even though I could do the largest dilator, it still always hurt.

I was about ready to transition to intercourse but because my husband is bigger than the largest dilator, I was scared. So I bought a vibe that was just slightly bigger that my husband thinking that if I could do the vibe then I would have the confidence to transition to intercourse. I used the vibe three days in a row and it hurt only a little bit. Well, I don't know if it was from the vibrating or the new lubricant I was using but after the third day I had the worst pain down there I could imagine. I thought it was a yeast infection so I took medicine for that but the pain was still there. It hurt so bad that I would pretty much lie around the whole time I was home and avoid even getting up to get a drink or something. I went to the doctor and they weren't helpful and just rescheduled me so I went back again and was referred to the pelvic pain clinic where I met my WONDERFUL doctor and nurse. They diagnosed me with vulvar vestibulitis.

For those who don't know, v.v. is a chronic pain condition where the nerves start sending a normal pain signal but for some reason the signal keeps being sent over and over and over again and the nerve basically gets stuck sending the pain signal forever which is no fun. For me I also had urinary involvement so my bladder hurt a lot and I had to pee all the time and could never tell if my bladder was full. I think that I probably always had low level v.v. and then all that motion and perhaps an allergic reaction to the new lube caused a really terrible "flare-up."

So now my v.v. is pretty well under control and hubbie and I can have intercourse. The vaginismus is totally gone. It still surprised me but he can just slip it right in and out without my PC muscles tightening.

There are lots of different things that you can do to try to control v.v. but I'll list what works for me in case it helps anyone out there who was recently diagnosed.

Behavioral Modifications:
-I only use cetaphil gentle cleanser when I wash down there. I use "real" soap on the rest of me.
-I never wear jeans. Okay, well I do every now and then but I try not to.
-I wear skirts as much as possible. The waist band on pants hurts my bladder sometimes and the seam in the crotch can also irritate me.
-I don't wear underwear as much as possible (this is mostly around the house. Don't worry I wear underwear under my skirts!! =)
-I only wear comfortable, cotton underwear and no thongs of course. (Okay, so I cheat on this one sometimes too! =) )
-I don't drink orange juice or cranberry juice or eat hot peppers. I'm not entirely sure why these cause me so much pain because lots of people with v.v. don't have to change their diet (sometimes I suspect that I might also have mild interstitial cystitis... but I don't want to get off topic here!)

-I apply a specially compounded medicine twice a day that has estrogen and lidocaine in a neutral base. I use a syringe and mirror so I apply it in exactly the right place. This is different from the regular lidocaine that you can get at any pharmacy. Regular 5% prescription lidocaine is in an acidic base that can burn some people (it burns me badly!) so my doctor wrote a prescription for specially compounded lidocaine that has the estrogen in it and the neutral base keeps it from burning. One warning: According to my pharmacy, the lidocaine that I use is NOT condom compatible because the base can break down the latex.

-I take Elavil (a.k.a. amitryptiline) which is a tricyclic antidepressant that is also used for chronic pain. My dose is gradually being increased. Right now I'm on 50 mg a day and I'll
probably end up at 75 mg a day or so by the end.

-When my bladder hurts, I take azo-standard which is a reddish pill that you can get over the counter, usually used to help with the physical symptoms of UTI's. Warning: It turns your pee bright reddish-orange and your pee will stain anything it gets on!!

With doing these things, the pain is MUCH better than it was before. Most of the time I don't hurt and when I do, it's usually because I did something silly like wore jeans. (Gosh, I miss jeans!) Different things work for different people so do what works best for you.

I just wanted to add one other thing for those out there who aren't able to have intercourse yet. My husband and I are about to have our two year wedding anniversary and I am very thankful for having such a great man and a great marriage. Being able to have intercourse does not solve any relationship problems, does not lead to more commitment, and will not make you happier! So if you are sad, have an unhappy marriage/relationship, or can't get along with your partner, the answer is not intercourse! I have faith that there is an answer to those problems, but I can guarantee you it's not as easy as intercourse. So don't look to intercourse for those things. Now that we are having intercourse, nothing has changed. We have a happy blissful marriage that we have built on God and on commitment. Not something as physical and fleeting as sex.

Anyway, I'm interested to hear what has worked for other people, especially if anyone has had the perineoplasty (sp?) or shots of botox or neurontin.

Thanks for reading such a long post!



Thank you for sharing this story Infilata..
I am sure it will be very useful and reassuring for a lot of women...
And maybe helpful to some doctors too Wink

most of all, it's good to see your husband and yourself had a close loving relationship before intercourse was fully possible just as you do now..

And guess one lesson to learn for all of us here is:
don't put up with painful intercourse, ever!!

Re: v.v.


And guess one lesson to learn for all of us here is:
don't put up with painful intercourse, ever!![/quote]

Amen to that!! Forum Index -> HEALTH CONDITIONS LINKED TO VAG (Public Forum)
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