I thought of posting this under general questions, but I chose here because I’m seeking support as well as information, and everyone in MPSIMS is just so darn nice
Mr. Gr8Kat and I have been married about 2 1/2 years now, and our sex life has been… rocky. I finally got up the courage to call a counsellor and after 2 or 3 sessions of describing our difficulties in agonizing detail (I’ll spare you), she suggested the problem might be vulvar vestibulitis syndrome.
I’ve done some research on my own on the web, and quite a few of the symptoms sound like a match. It’s nice to know that I’m not crazy, just a freak. God, must my body screw up EVERY part of my life??
Anyway, I was wondering if anyone else has had any experience with this disorder and what treatments/therapies helped the most. Thank you in advance for your advice and kind words. (Please let there be kind words.)
Gr8Kat, don’t call yourself a freak. You’re NOT a freak. I have no experience with VVS, so I can’t offer any advice, but I can tell you that this is a health issue, and not a reflection on you as a person.
I think it’s great that you did some research on VVS for yourself. Hang in there, and take care. It sounds like VVS is treatable, right? You’ll be fine, dear.
My most recent ex girlfriend (ahem) had this problem for the duration of our two year relationship. I fully sympathize with you. “Rockey” doesn’t begin to describe what it does to the sex life.
Steph and I went to a couple different specialists here in town. They perscribed two types of ointment and physio. I’m afraid I can’t remember the names of the creams, I just remember how much she would complain about having to put it on. I remember that one of them was little more than a local anesthetic, which pretty much did nothing. The other was a topical cream that was used for another disorder as well, that is totally unrelated to vulvar vestibulitis. I’m sorry but I can’t remember anything more about it. =P
The physiotherapy (sp??) involved a vaginal probe to measure involuntary response to pressure stimulus, and to measure muscle tone. It also involved a lot of exersise. I’m sure your doctor will be able to refer you to someone who can do it. They’re hard to find, though. The city I live in only had one.
The unfortunate part of this story is that the problem never got better. Steph, however, wasn’t very good about putting the cream on twice a day and doing her exersise regularly. I’m sure that you would be slightly better about it though, since you’re married to the fellow in question and you’re not just using him to fix your lifes problems. =P (am I bitter? Oh, just a little bit.)
The doctors we saw always said that the problem required different solutions for each person. They also don’t actually know why it happens. They just know it’s the nerves behind certain gland openings that are sending messages of pain to the brain instead of touch. What sets it off? Why does it happen? It’s a mystery.
If you look, I know Steph was able to find several different books which mentioned the problem. I’m sure you could find them as well.
Being from the other side of the fence, and not a doctor, I cannot offer much but sympathy. In the course of 39 years of marriage my wife and I have had a few experiences with “woman problems” so I have a very good idea how distressing they can be. Check out this site: http://medicalreporter.health.org/tmr0999/is_sex_painful.html
I notice that it may be caused by oxalites. Since I have suffered myself from kidney stones which can be caused by oxalites. I am up on that, you could try a low oxalite diet, which means essentially drasticallly reducing your intake of things like spinach, chocolate, coffee, tea, (there is a whole list)for a few months to see if there is any improvement. Of course if it is a muscle spasm as some experts seem to think, this will have no effect whatsoever, but it is a harmless diet in any case.
I’ll second what Audrey said…my brain just isn’t working enough to come up with anything other than “hands over kind word”…and for what it’s worth, I’ve been studying up on genetics recently, and it turns out that we’re all freaks.
::slips Gr8Kat another kind word under the table::
Awww… what a bummer. I’m not a sufferer, but being one to experience some very intense menstrual cramps I could just imagine how the pain must be. Doesn’t help that it should be a HAPPY activity for you.
As a friend of mine used to say though, “there’s lots of ways to skin a cat,” so if vaginal penetration is not the solution, you might consider various alternatives for Mr Gr8Kat’s relief, and perhaps a vibe for you??
– Baglady looks into her bag o’ toys, and whips out a package of new Hello Kitty vibe for Mrs Gr8Kat. Meow!
Oh, baby, I do feel for you. I’ve been sitting here browsing a little, getting an education. I don’t have it myself, nor do I know anybody who has it, but everybody in my family has had weird diseases and syndromes at one time or another, and I know exactly what you’re going through. First there’s the “it’s all in your head” response from medical professionals, then there’s the search for answers, then the experimentation…
Anyway, http://www.primenet.com/~camilla/vulvodyn.htm here’s an informative (and rather lengthy) website. I notice VV is linked with fibromyalgia, among other things. My mother has fibromyalgia, and she spent years trying to convince doctors that it wasn’t all in her head, so I know where you’re at.
Keep at it, babe. Don’t stop asking the docs for answers. If the one you’re talking to isn’t helping you, then find someone else.
And don’t listen to the ones who say arrogantly, “Well, it’s just because subconsciously you don’t want to have sex with your husband.” From what I’ve seen in the little browsing I’ve done, that may be a response you’ll get from the occasional (and hopefully rare) clueless health care professional. Apparently it’s a very real physical problem, and deserves to be treated as such.
{{{{Gr8Kat}}}}
I have never had VVS(nor heard it of before now), but I can empathize with having problems that make sex painful (long story). I know it can be how hard it can be, but I am sure you will get through this.
I wish you the best of luck and hope things get better for you.
After the therapist suggested the problem might be VVS, we met with a nurse practitioner who prescribed an anesthetic cream. I confess, we haven’t tried it yet. Little scared to get back on that horse, if you know what I mean. My husband has been patient, and I’m thankful for that.
If the cream doesn’t work, then other treatment options include diet, as Retief mentioned, and surgery to remove the nerve endings that are causing the pain. The therapist and the nurse practitioner both seemed to think that the muscular dystrophy might play a role, but I don’t know if the kind I have (FSH) normally affects pelvic muscles. I’ve e-mailed MDA with this question, though, so I’ll just wait and see what they say.
I must say I’m disappointed my previous doctor didn’t think of this, though I’ve read a lot of doctors aren’t familiar with it. But over the last couple years, I’ve had to have multiple pap smears because each kept coming back with slightly abnormal results, “mild dysplasia,” in other words, too close to normal to be cancer, but too abnormal to just call normal and ignore. Each pap smear was an exercise in torture, but my doctor told me he thought I was just too tight :o and time and experience would take care of it. The gynocologist and gynocological oncologist he referred me too seemed to agree. I figured I was doomed.
I still feel sort of doomed; I don’t relish the idea of surgery, but it would be nice to be normal (I know Mr. Gr8Kat would agree emphatically and enthusiatically). And maybe we don’t need to do anything that drastic; I’ll have to burn that bridge when I come to it
Thanks for letting me talk about this (Though, like I told my husband, I am getting tired of always talking about my vagina at doctor’s appointments. Just once, we need to have a discussion about his penis. His response? “I don’t know anything about my penis!” Heheh, time to learn :))
Gr8Kat, I feel for you. I know all about the pain. Fortunately for me, it wasn’t VVS, but a severe candida problem, which I now have pretty much under control. But there is nothing worse than wanting pleasure and only experiencing pain.
There has been a lot of discussion about VVS here in Sweden recently, and it it so sad that doctors know so little, and if they don’t know they seem to make stuff up as they go along. One woman was told by her doctor that she had probably been molested as a child and just needed therapy. How stupid can some people get? The same woman was told by another doc that she was just “too tight” and childbirth was the best way to “loosen up”. This really pisses me off. A woman’s problems are far too often ignored and frowned upon.
Anyway, I just want to tell you to fight the fight. As far as I know, there’s not one treatment for this, but it seems like there are as many solutions as there are sufferers.
I know there is a supportgroup on the net, but it’s in Swedish so I doubt it would do you any good Keep us updated will you?
