Vulvodynia experiences?
June 24, 2010 11:24 AM Subscribe
Do any of you have experience with vulvodynia/vestibulodynia (chronic vulval pain)?
I received this diagnosis a while ago and am still coming to terms with it.
This has come up after repeated yeast infections (which have finally gone!) and lots of pills, creams and pessaries, including steroid and aqueous creams for sore, cracked skin (well, sore, cracked mucous membrane) around the area. My gynaecologist says there are no visible signs of soreness any more, and I've been tested for every disease under the sun that it could be - all negative.
It manifests as hypersensitivity to touch around the entrance to my vagina. No tampons, no fingering, definitely no sex.
The treatment I'm on so far is an increasing dose of Amitriptylene and weekly appointments with a clinical psychologist - who so far has just been surprisingly scandalised by details of my sex life and worried about my "lack of emotional intimacy" despite the fact my only recent sexual partners are my long-term boyfriend and a few very close friends. Go figure.
I've been avoiding most kinds of sexual contact except on rare occasions when I'm really relaxed and turned on, and while my partner has been really understanding and supportive it's having a detrimental effect on our relationship (both of us get cranky without sex, so together we're cranky squared).
I've not really talked about this with my friends, partly because it's about my vulva and partly because it's just so incredibly awful. I'm feeling quite lonely and down about it.
Have you or your partner dealt with this? Is the treatment actually going to work or am I just never going to have sex again?
For private responses email: igotthebrokenvagblues@gmail.com
I received this diagnosis a while ago and am still coming to terms with it.
This has come up after repeated yeast infections (which have finally gone!) and lots of pills, creams and pessaries, including steroid and aqueous creams for sore, cracked skin (well, sore, cracked mucous membrane) around the area. My gynaecologist says there are no visible signs of soreness any more, and I've been tested for every disease under the sun that it could be - all negative.
It manifests as hypersensitivity to touch around the entrance to my vagina. No tampons, no fingering, definitely no sex.
The treatment I'm on so far is an increasing dose of Amitriptylene and weekly appointments with a clinical psychologist - who so far has just been surprisingly scandalised by details of my sex life and worried about my "lack of emotional intimacy" despite the fact my only recent sexual partners are my long-term boyfriend and a few very close friends. Go figure.
I've been avoiding most kinds of sexual contact except on rare occasions when I'm really relaxed and turned on, and while my partner has been really understanding and supportive it's having a detrimental effect on our relationship (both of us get cranky without sex, so together we're cranky squared).
I've not really talked about this with my friends, partly because it's about my vulva and partly because it's just so incredibly awful. I'm feeling quite lonely and down about it.
Have you or your partner dealt with this? Is the treatment actually going to work or am I just never going to have sex again?
For private responses email: igotthebrokenvagblues@gmail.com
Heh, velociraptor.
More on topic, is your gyno one who specializes in vulvovaginal health? To an extent, all gynecologists know about vulvodynia/VVS and treat patients with them at least occasionally, but it would help to find a clinician who has a lot of experience in treating those conditions. Have you had your hormone (in particular estrogen) levels checked? If not, then your gyno is missing some of the diagnostic puzzle pieces. There's a whole variety of other physical issues that might be going on here, and TCAs and psych work aren't going to fix them.
FWIW, I don't have vulvodynia, but I have been through the "we'll just pretend that your problems are purely psychological and maybe they'll go away" gauntlet with respect to gyne health.
posted by thisjax at 11:37 AM on June 24, 2010
More on topic, is your gyno one who specializes in vulvovaginal health? To an extent, all gynecologists know about vulvodynia/VVS and treat patients with them at least occasionally, but it would help to find a clinician who has a lot of experience in treating those conditions. Have you had your hormone (in particular estrogen) levels checked? If not, then your gyno is missing some of the diagnostic puzzle pieces. There's a whole variety of other physical issues that might be going on here, and TCAs and psych work aren't going to fix them.
FWIW, I don't have vulvodynia, but I have been through the "we'll just pretend that your problems are purely psychological and maybe they'll go away" gauntlet with respect to gyne health.
posted by thisjax at 11:37 AM on June 24, 2010
I had a friend who talked about her experience with vulvodynia here.
posted by jessamyn at 11:37 AM on June 24, 2010 [1 favorite]
posted by jessamyn at 11:37 AM on June 24, 2010 [1 favorite]
Are you using baby wipes or vaginal wipes? They recently have been found to be a hidden cause of problems like the ones you are describing.
posted by curiositykilledthelemur at 11:41 AM on June 24, 2010
posted by curiositykilledthelemur at 11:41 AM on June 24, 2010
And find a new clinical psychologist who isn't such a prude! How unfair that the person who should be helping you is judgmental!
(and as an aside - do you enjoy oral sex? perhaps y'all could get in touch with 69 or other forms of mutual oral as your main sexytime for now?)
posted by curiositykilledthelemur at 11:43 AM on June 24, 2010
(and as an aside - do you enjoy oral sex? perhaps y'all could get in touch with 69 or other forms of mutual oral as your main sexytime for now?)
posted by curiositykilledthelemur at 11:43 AM on June 24, 2010
tetralix's lidocaine ointment suggestion isn't "out there"; as a matter of fact my gynecologist prescribed me some, and pain during sex is precisely why. She did suggest waiting at least 20 minutes before sex (or using a condom) so that it wouldn't also numb the guy's penis, which would likely extend the duration of sex beyond what I could tolerate.
She initially also had me using a steroid ointment which she says helps reduce symptoms of vestibulitis. You say that you've used steroid creams, but I wonder if this was a different type/application.
I do better with ...extremely...slow...penetration... It helps.
Hey, you don't need a scandalized clinical psychologist, or one who's failing to understand what goes on in your sex life. You can find somebody better.
posted by galadriel at 11:45 AM on June 24, 2010
She initially also had me using a steroid ointment which she says helps reduce symptoms of vestibulitis. You say that you've used steroid creams, but I wonder if this was a different type/application.
I do better with ...extremely...slow...penetration... It helps.
Hey, you don't need a scandalized clinical psychologist, or one who's failing to understand what goes on in your sex life. You can find somebody better.
posted by galadriel at 11:45 AM on June 24, 2010
Seconding the licocaine gel, I have four tubes stashed around (my bathroom, boyfriend's bedroom, work pencil cup holder, and purse). I use it 4-6x/daily, and (when I remember) a little while before sex. Teradude hasn't reported any numbing, and we do not use condoms.
My case is more mild than yours, but I have had success with the lidocaine. (Fingers crossed!) And, I am currently having sex that is pain free!
My heart goes out to you. Fucking sucks, doesn't it. I thought I would have had the, I don't know, perspective and strength to handle it just fine, chronic vulvar pain, but, turns out it's really tough. I'm doing well now though. A big internet hug to you and your partner.
posted by teragram at 11:57 AM on June 24, 2010
My case is more mild than yours, but I have had success with the lidocaine. (Fingers crossed!) And, I am currently having sex that is pain free!
My heart goes out to you. Fucking sucks, doesn't it. I thought I would have had the, I don't know, perspective and strength to handle it just fine, chronic vulvar pain, but, turns out it's really tough. I'm doing well now though. A big internet hug to you and your partner.
posted by teragram at 11:57 AM on June 24, 2010
If you want some nonfictional inspiration/commiseration, you should check out Susanna Kaysen's book The Camera My Mother Gave Me.
posted by hermitosis at 12:10 PM on June 24, 2010
posted by hermitosis at 12:10 PM on June 24, 2010
One thing I can say is that you need a new counselor, STAT. The last thing you need is to feel judged by the person who you are paying to help you! Of course you're having "intimacy" problems - if you can't get comfortable enough to be physically intimate it's going to mess up your emotional intimacy!
Have you looked at ways to reduce your anxiety? I'm sure that this situation is causing an incredible amount of anxiety...which puts your body into hyperdrive and makes everything more sensitive...and you get this horrible anxiety cycle. In the long-term, (good) therapy, yoga, etc will help decrease your overall anxiety. In the short term, definitely the lidocane cream and maybe something like a small dose of Tranxene or Xanax to relax you before sex.
posted by radioamy at 12:54 PM on June 24, 2010
Have you looked at ways to reduce your anxiety? I'm sure that this situation is causing an incredible amount of anxiety...which puts your body into hyperdrive and makes everything more sensitive...and you get this horrible anxiety cycle. In the long-term, (good) therapy, yoga, etc will help decrease your overall anxiety. In the short term, definitely the lidocane cream and maybe something like a small dose of Tranxene or Xanax to relax you before sex.
posted by radioamy at 12:54 PM on June 24, 2010
I've had this since I was a young teenager, but wasn't formally diagnosed until I was 21. I really got aggressive treating it almost two years ago and now can have sex, use tampons, get a pelvic exam, etc. with tolerable to no pain.
Here's everything I've used:
Lidocaine gel. I'd cover a cotton ball in it, insert the cotton ball, and leave it there overnight, every night. Also useful when applied about 15-20 minutes before sex--the gel I had was water based and OK to use with condoms. Very useful!
I tracked down a OB/GYN who had experience with vulvovaginal pain disorders. She prescribed me topical gabapentin (Neurontin)--it's an anticonvulsant ground up into a cream--and I'd apply that three times a day. This seemed to help a lot. It is supposedly a more efficient delivery system than taking antidepressants or anticonvulsants orally, and eliminates the sometimes unpleasant side effects that those drugs can have.
Pelvic floor physical therapy, which involved working with dilators and also biofeedback. This, ultimately, was the breakthrough.
Research, specifically The V Book.
Avoiding message boards/blogs/online communities for women with VVS. I understand a lot of women like the support, but I found it to be very discouraging reading how no one else was making any improvements. It just made me get really weepy, convinced I was permanently stuck with this. Keep in mind that most "success stories" don't bother posting in these online communities once they feel better!
Maintaining an "everything but" sex life, where we did everything but penetrative sex. Kept us sane, I can't recommend it enough. Can you still orgasm with a clitoral vibrator? What about oral? Whatever way you can get off without pain, do it! And ditch the sex-negative psychologist, for sure.
posted by castlebravo at 12:58 PM on June 24, 2010
Here's everything I've used:
Lidocaine gel. I'd cover a cotton ball in it, insert the cotton ball, and leave it there overnight, every night. Also useful when applied about 15-20 minutes before sex--the gel I had was water based and OK to use with condoms. Very useful!
I tracked down a OB/GYN who had experience with vulvovaginal pain disorders. She prescribed me topical gabapentin (Neurontin)--it's an anticonvulsant ground up into a cream--and I'd apply that three times a day. This seemed to help a lot. It is supposedly a more efficient delivery system than taking antidepressants or anticonvulsants orally, and eliminates the sometimes unpleasant side effects that those drugs can have.
Pelvic floor physical therapy, which involved working with dilators and also biofeedback. This, ultimately, was the breakthrough.
Research, specifically The V Book.
Avoiding message boards/blogs/online communities for women with VVS. I understand a lot of women like the support, but I found it to be very discouraging reading how no one else was making any improvements. It just made me get really weepy, convinced I was permanently stuck with this. Keep in mind that most "success stories" don't bother posting in these online communities once they feel better!
Maintaining an "everything but" sex life, where we did everything but penetrative sex. Kept us sane, I can't recommend it enough. Can you still orgasm with a clitoral vibrator? What about oral? Whatever way you can get off without pain, do it! And ditch the sex-negative psychologist, for sure.
posted by castlebravo at 12:58 PM on June 24, 2010
The person who graduates last in their class in medical school is called "doctor." A sub-par psychologist isn't even called that. Dump them. You wouldn't go back to a restaurant where the staff treated you poorly, why show lower standards for your medical care?
posted by phearlez at 1:21 PM on June 24, 2010
posted by phearlez at 1:21 PM on June 24, 2010
I second the pelvic floor therapy. I went for a different issue after having a baby (couldn't sit down). Amazingly after 3-4 mo of therapy, it was completely resolved.
You can give it a try. And lots of times the therapists are women so no embarassment in therapy (which can get intimate).
posted by stormpooper at 2:05 PM on June 24, 2010
You can give it a try. And lots of times the therapists are women so no embarassment in therapy (which can get intimate).
posted by stormpooper at 2:05 PM on June 24, 2010
lidocaine and pelvic floor therapy helped me with similar issues. there are physical therapists who specialize in pelvic floor rehabilitation--ask your doctor to refer you to one.
the strategy you probably want to take with psychotherapy (and it sounds like you need a more sex-positive therapist) is getting out of the cycle of dread. you expect it to hurt, you experience some discomfort, and your brain instantly dials it up all the way to 11 because that's what it's always done in the past (and no, you're not crazy because this happens--this is classic pavlovian conditioning). naturally, you recoil and stop what you're doing and it becomes yet another awful experience reinforcing all your previous awful experiences.
this can terribly hard to break, but a good therapist can help you with that. you may never have a totally pain-free experience, but with practice and time, you can retrain your brain not to overreact, and recognize that the pain is, on a scale of 0-10, actually a 4 rather than 11. and that makes it so much more manageable and you'll feel so much less fearful.
seconding earlier advice to stay out of the online support group forums for now...my heart goes out to all those women, but as the previous commenter noted, those are almost entirely populated by people for whom therapy has not worked. it will be a long time before you know if you're one of those women, and in the meantime it will just reinforce your cycle of dread.
memail me if you want to talk.
posted by thinkingwoman at 3:40 PM on June 24, 2010
the strategy you probably want to take with psychotherapy (and it sounds like you need a more sex-positive therapist) is getting out of the cycle of dread. you expect it to hurt, you experience some discomfort, and your brain instantly dials it up all the way to 11 because that's what it's always done in the past (and no, you're not crazy because this happens--this is classic pavlovian conditioning). naturally, you recoil and stop what you're doing and it becomes yet another awful experience reinforcing all your previous awful experiences.
this can terribly hard to break, but a good therapist can help you with that. you may never have a totally pain-free experience, but with practice and time, you can retrain your brain not to overreact, and recognize that the pain is, on a scale of 0-10, actually a 4 rather than 11. and that makes it so much more manageable and you'll feel so much less fearful.
seconding earlier advice to stay out of the online support group forums for now...my heart goes out to all those women, but as the previous commenter noted, those are almost entirely populated by people for whom therapy has not worked. it will be a long time before you know if you're one of those women, and in the meantime it will just reinforce your cycle of dread.
memail me if you want to talk.
posted by thinkingwoman at 3:40 PM on June 24, 2010
This thread is closed to new comments.
This is a bit out there, but maybe you could get a script for topical lidocaine gel to be applied just to the affected area before sex? Your partner would need to wear a condom and the gel would migrate around, but until a longer-term solution is found it might help.
posted by tetralix at 11:33 AM on June 24, 2010