Vulvodynia Support

This is an intro of sorts, along with a little mini-vent. My name is Mandy. I started having sex five years ago, when I was eighteen. I knew long before that something was "strange" about me. I never enjoyed having anything in or near my vagina, and sometimes it hurt. Sometimes sex hurts so much that I have to bite my lip to keep from crying, then I'm sore and raw the next day, even with lots of lube and foreplay. Sometimes, it gets better so that it doesn't hurt, but even then there's no pleasure. Rarely, I'll get kind of a "that's kinda nice" feeling, but definitely nothing I'd call pleasure.

Two years ago, after some research, I realized I had vestibulitis. I have seen a physical therapist, which has helped greatly with the involuntary muscle spasms I was having in anticipation of the pain. I was prescribed a lidocaine cream, which hasn't helped a heck of a lot. My gynecologist mentioned the possibility of estrogen cream, but is VERY reluctant to prescribe it because I also have PCOS and I'm having enough hormonal trouble as it is; she doesn't want to mess with it any more. She also mentioned the surgery, but HIGHLY recommends against it, and I agree.

DH and I have sex maybe once a month, usually less. I do NOT initiate sex at any time, unless I think I'm ovulating, because I don't enjoy it. I'm a very sexual person and enjoy sexuality in general, which makes it even harder. The only thing I dislike about sex is vaginal stimulation or penetration.

I feel sometimes like I'm missing out, not enjoying sex. I can't talk to my friends about sex because my experiences are totally different than theirs. DH feels like it's his fault sometimes, since I'm so reluctant to try new things for fear of increasing the pain.

Does anyone else ever feel this way?

Will I ever enjoy sex, or is this something I'm just going to have to accept and learn to deal with?

~~Mandy

Hi Mandy, I'm glad you found us!  I wish I could tell you that we had the perfect solution (believe me, I wish I had it for me!), but all I can offer you is a sympathetic ear.  I can relate to how you feel, with your mind wanting to have sex and your body not cooperating. 

I was diagnosed at 27 with dysesthetic vulvodynia (unprovoked genital pain), which disappeared around a year later, but it comes back every time I get a bladder infection or if my hormones get messed up (like when I tried to get off birth control a year ago).  I'm also prone to bladder infections, and they're threatening me with a urologist if I get another one before April.

I have a group of highly sexual friends, my husband and I are pretty athletic, and with athletic people usually comes a healthy sex drive, and I definitely feel out of the loop.  My husband wants to have sex every day--that's not going to happen.  We have sex about once a week, and I endure it.  I rarely enjoy sex with him, which hasn't always been the case (we've been together almost 10 years), so I know what it's like to want him, and that's very frustrating to me.  He doesn't understand, of course.

Would trying the estrogen cream be so bad?  If it worsened your PCOS (some doctors don't think the estrogen is systemic when it's applied as a cream), you could stop using it.  Granted, I don't know what you're dealing with for PCOS symptoms, but it might be worth a shot.  Estrogen doesn't hang out in the body all that long and you could start with just a pea-sized amount on your external genitalia, rather than inserting 1-2 grams into your vagina.

I wish I had a crystal ball and could tell you that one day this would all be over and you'd enjoy sex with your husband.  I really do.  But nobody knows.  The prognosis of this disorder is so different for everyone, and the medical help available is so limited.

Feel free to talk to us any time, I know it looks quiet, but I'm usually here most weekdays.  Good luck to you!

Judie

Co-cl for Birth Control 
Cl for Vulvodynia Support
Birth Control Homepage

 

(Since Jill has her favorite shoes....)

I am going to repost my reply to another poster. It might help a little with the physical pain of sex.

Have you ever tried Xylocaine? It's an over the counter topical freezing agent. I have vestibulitis and my gynocologist told me to use this. You put it on the glands that are are on either side of the vaginal opening, 5 minutes before sex. It numbs the area so you don't feel pain on entry (which is the part of sex that I found very painful).

Hopefully this helps somewhat. I found it helped me. It's just the waiting 5 minutes before sex thing that is very annoying. Good luck. :)