UPDATE

[elegia.livejournal.com]

Hey all, see my last entry here for reference as to how I got into this mess: http://community.livejournal.com/vaginapagina/12329090.html

I've since been diagnosed with IBS (Irritable Bowel Syndrome), which explains the incredible pain in my stomach & difficulty digesting anything but water. After reading some of the comments to this entry, I began to think it may indeed be a pelvic muscle clenching problem (especially because of extra symptoms, see below), but it hurts so much inside and at the opening of the vagina too. Also, itching of my clit & pubic hair. The itchy discharge continues. As well intense aches which switch from the left to the right side of my vagina.

To make things worse, I've recently also acquired muscle pain in my legs and around my groin. It feels to me as though muscle dysfunction is slowly spreading through my body and taking it over.

Now, here are a few things I've recently been told:

By my smart-ass gynaecologist: you'll just have to wait until it goes away. I've never heard of anyone who had this their whole life. This is from a health professional?! he just seemed to be totally ignored of vestibulitis, vulvodynia, every pain syndrome, and he's supposedly a specialist.
Also: that itching and other non-threatening symptoms could occur because the whole area is aggravated.

By my boyfriend's mum: women's health problem are usually interrelated, if one thing's wrong it puts the whole system out of joint. She recommends acupuncture & some kind of change in diet.

Anyone able to offer any advice, at all? As to whether any of the things above are true, and who I should see next? Should I continue to try so-called specialists in vulvar pain or switch to a dermatologist or physiotherapist?

My GP is hopeless, I need a referral to do anything because I'm doing it through my parents' health insurance.

Mentally, this whole ordeal is really upsetting. I begin to cry almost every time I stop to think about it in detail.
The endless stress of trying to figure out what's wrong with me & if it'll ever go away impacts on my daily life so much, I feel completely alienated from the rest of the human race. I am crying as I write this.

I realise that this may belong in the vvs community, but I'm waiting for membership to be approved, so if any of you can help me I'd really appreciate it.

Comments

[archangelbeth]

Things that relax you, that de-stress you physically, are not to be sneered at -- stress makes it harder to handle, well, everything! Chronic pain, chronic discomfort, it does a number on you. So if acupuncture or therapeutic massage or the like help you de-stress, that's not a bad thing. Depending on your diet, you might indeed feel better with some changes; IBS, from what I've read on this community and a few others, can be treated with certain diets. I'm not going to say either would be the "magic bullet" that is the cure, of course.

Your gyno sounds like a twit. Fire him and find another, is my advice. Call them up and say "Do you take X insurance? Is Dr. Y familiar with vulvodynia?" When you get someone who answers "yes" to both, get your GP to give you a referral to that one. If you find someone who knows what they're talking about, then they can both say, "Yup, this is what we're dealing with" and "You know, this doesn't look like the problem. Let's see what else it might be."

Is there any way to get another GP, as well? If you got a good one, you could write down everything that's bugging you, whether or not it seems related, and hopefully it could all get addressed. (Feeding all the symptoms into Google at once might also give you a jackpot -- but it might also give you a lot of confusing hits, each one different and dire.)

*offers virtual hugs* Luck!

[elegia.livejournal.com]

Thank you for replying so quickly.

I agree about the de-stressing. I definitely do need to find some way of not bursting into tears every time I think about this. Unfortunately I'm in the last six months of a university degree & I've completely lost the ability to concentrate on it. Because of this.

I am already looking for another specialist. Twice was too many chances! He didn't know what he was talking about from the off. The thing is, in my area there don't seem to be any others than the person I've already tried. The way I've been doing it is through my insurance company, getting them to tell me who they have on their books. But I could try to look via individual clinics I guess!

I am also definitely going to switch my GP. My university medical centre which I'm currently registered with has given me nothing but problems.

I have done lots of Net research which seems to suggest to me that I have some form of vestibulitis/vulvodynia. But I don't trust myself until I get a diagnosis. As you can probably tell it is driving me a little nuts.

Thanks for your advice & kind hugs!

[pocochina.livejournal.com]

I wish so much I could help. I'm having some trouble right now too and am meeting my seventh health professional soon. All I can think is to second the advice for you to get a new gyno - if this one doesn't know about the conditions you might have, you absolutely deserve better care. I know it sounds trite, but it's not your fault, and even if it was, you would still be in pain and deserve help.

I am so, so sorry you're going through this.

[tara-the-tiara.livejournal.com]

Hi there,

I have had vulvodynia and vestibulitis for 2 years, recently diagnosed. I'm sorry you have to put up with such a crappy health 'professional'

Have you looked into something called Pelvic Floor Dysfunction? I'm pretty sure i also have this and am talking to my dr about it.. you definately tend to clench the muscles in reaction to pain. I believe this would also cause the pain with sex etc.

I'm not sure if you know this or not but i thought i'd mention- vulvodynia can cause the itching and pain in the groin, down your thighs and in your backside..

Sorry i realise this was a little disjointed. x

[kiteless.livejournal.com]

Let me tell you a little secret, IBS is possibly the most obnoxious thing to be diagnosed with. It won't kill you, there's very few treatments for it (if you are IBS-C or go between C and D), and no one really knows what causes it.

I HAVE read studies that show some IBS is due to pelvic floor dysfunctions. If you feel that might be your problem, call around to some gynos in the area and see if anyone of them have experience with it. You can do biofeedback that can really help.

It also seems that VVS tends to happen to people that have IBS, depression, fibro myalgia, etc. Again, if you think you have VVS call around. IT is essential you get a gyno that is of the school that VVS actually exists. I found one and it has made a huge difference in my life. No more pain.