VVS Community

You may remember me pretty much just as the person you asked to join the group. I haven't been active on here much at all because my daughter has kept me quite busy, and I can't easily approve memberships through the LJ iPhone app (my phone being my main Internet access these days).

Anywho, if you're reading, had asked to join in the past four or five months and I didn't get back to you, try again.

Thanks, everyone, and here's to one more pain-free days in the future.

Hi all

I am coming to the end of my supply of Microgynon from the docs and I have been thinking about coming off the Pill (or any other hormone-related contraception) for a while just to see if it makes a difference. We're almost completely unable to have PIV intercourse as it is so really I'm taking it for nothing at this point and pumping artificial hormones into my body can't be helping...

I wondered if anyone had had any luck at all coming off hormone-control contraception? I know everyone is different but if even one or two people had good results I'd be willing to give it a shot.

I'm currently reading a book that I will be reviewing after I finish. But so far I really like it and think it could be good for women who have complications with intercourse. The book is Sheri Winston's Women's Anatomy of Arousal (link is from GoodVibes, incase you're at work). 

It really goes in depth about women's anatomy and has beautiful illustrations along the way. I've found the more I'm comfortable with my body, the better my results have been in pain reduction. Just wanted to pass it on. If anyone is interested I'll post the review here when I'm finished. 

Hey everyone, I've got a CHALLENGE for you!  In addition to the medication I'm using, I want to see if changing my diet will help my VVS. 

What makes me think of doing this?  Well, largely because I'm somewhat of a hippy--though I don't look it--and I can't help but wondering if things like environmental pollutants, food dyes and additives, hormones and antibiotics in meat, and chemicals in packaged foods have had some negative effect on my vagina functioning properly.  The response I've gotten from every doctor I've talked to about this has been: we have no idea what caused this, and why it's turning out to be so prevalent.  So maybe it's more complicated than "some women are just born this way."  Maybe the environment we live in and the crazy foods we eat has some effect on us.  Medical research studies I've read say that VVS is an inflammatory condition in the vestibule.  Biopsied tissue from women who have gone under the knife almost always shows chronic inflammation in the tissue (just go look at some NIH studies).  I've also read that the typical American diet can promote inflammation in addition to all of the other shitty things it does to the body (obesity, diabetes, increased rates of heart disease and cancer, etc.).

So.  I've decided to give a true, hard-core anti-inflammation diet (based off of a scientific study) a try for 30 days.  After 30 days I will assess the pain in my vestibule to see if there are any changes, and decide whether or not to continue with the diet from there.  I'll post regularly on here while I'm going through this process, but I also wanted to ask/challenge you to join me!  The great thing about multiple people doing this at once will be two-fold:

1.  We can help support and motivate each other, as this diet is not easy to follow.  No sugary foods. No packaged foods.  No typical American comfort foods of any kind, really. 

2.  If more of us do it, we can have a more accurate view of whether or not diet affects VVS.  If five of us do it, and four of us get great results, then I'd say it might be a good treatment plan that we can suggest to other sufferers.  But if I'm the only one doing it, and I'm the only one who it doesn't work for, we'll never know!

Ready to try it with me?  Here's a link to the study I'm using as a reference for the diet.  It has great info on ratios of fats to proteins to carbs, and what types of each you should be eating.  I found it via the NIH, so it's legit: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2952901/

Here are the rules I'm holding myself to for these thirty days:

1.  Eat no more than 2000 calories per day on any day.  This is actually a bit higher than what the study sites as ideal, but I'm making the rule a bit more lenient because there might be days when 1500 calories per day is just too hard to follow. 

2.  At each meal and snack time, eat the right combo of fats (the good kind), lean protein, and whole carbs.  Also, get at least 25 grams of dietary fiber per day.  See the study for more of what this means.

3.  No bad fats, limited red meat and fatty proteins, and no refined carbs.  No packaged food of any kind.

4.  Drink 2 liters, or 8 8 ounce glasses of water per day.

5.  Take fish oil supplements each day.

6.  Try for a high percentage of organic and ethically produced foods. 

7.  (not part of the study, but my own rule) Drink a cup of Green Tea each day.  I've read in other places that Green Tea is a good anti inflammatory and generally great for the body in all kinds of ways.  I already drink it a lot--I just wanted to make it official here.

So there you have it, ladies.  If nothing else, this diet will probably make you shed a few pounds, and who doesn't want that at the beginning of the summer?  Let me know if you'd like to try it with me, and we can compare progress and results!

I'm a fan of web comics, and I ran across this a few minutes ago and of course it made me think about the moment I was diagnosed with VVS...but it also made me laugh. We need more of that right? Here it is:

Hi ladies! Sorry I've been sort of absentee since my last hopeful post (http://community.livejournal.com/vvs_community/151897.html) on this cream. I noticed a few comments asking for an update so here goes:

The bad news: The cream hasn't cured me. I still have pain to varying degrees--worse before my period, better in the middle of my cycle.

The good news: the pain is significantly decreased from what it used to be! What do I mean by significantly decreased? Well, my pain levels without any treatment were not bad enough to stop me from having sex, but they were bad enough that I pretty much felt pain the entire time I was having sex, and it was pretty irritating and generally made it hard to enjoy sex. I had a significant, but not unbearable burning sensation when touching my affected areas. With the cream, I would say that 80% of the sex I now I have is painfree after just a slight hint of pain upon penetration. 20% of the time I still have annoying pain during sex, but almost 0% of the time the pain lasts the entire time throughout sex. If it's a more painful time, the pain still usually goes away after a few minutes of going at it. There are all kinds of variables involved that make it better or worse--like I said, before my period the pain levels seem to increase a bit. Also, the sex position seems to matter a lot. Spooning sex, or any sex where my legs are closed is more painful as it increases the pressure in the area, and missionary or any position with open legs is better (you all probably know this from your own experiences anyway).

I realize that this isn't ideal, but honestly, it's so much BETTER than it was before, that I'm pretty happy. There are no side effects of the cream that I can notice, and it really doesn't hinder my sex life at all. This might be gross, and your BFs might not want to think about it, but you can have sex with the cream on. I just dab a little onto my vestibule before bed. My boyfriend knows something about the cream but not much. I usually just do it while he's not in the bathroom so he doesn't have to think about it. And if we end up having sex, everything feels normal. He's never complained of having any symptoms or anything, so I just don't worry about it, and put a bit more on before I go to sleep.

That said, yes, it's still annoying that I'm not 100% pain free. After about a week or two of using the cream I plateaued to this level of pain reduction and it's been that way for about 6 months. I also have stopped using the cream for a few weeks during that time, just to see what would happen, and the pain levels seemed to increase back to where they were. So...it's not a long term, healing solution.

I'm not in a place in my life right now (job-wise, healthcare-wise) where I can truly consider getting a vestibulectomy, but I haven't written of as a possibility in the future. What I can say about the cream is this: it provides a good amount of pain reduction, it isn't very pricey, there aren't any side effects, and you get results pretty fast.

That's all I can think of to share for now, ladies. If you've got questions, fire away!

I really wish there was better documentation of vulvodynoa's "history," so to speak. I enjoy reading historical fiction, particularly in the medieval and Renaissance periods, and lately I've been thinking about how vulvodynia would have been a million times more horrifying when women were essentially property, and their only value lay in their ability, to put it bluntly, to spread their legs and eventually provide heirs. They didn't have the option of not having sex - they would have to marry eventually, and then their husband would have absolute power over their bodies. Can you even imagine?

I wonder if, "back in the day," women were even able to see a doctor or perhaps a widwife for this kind of issue? I'm incredibly curious as to how vulvodynia was handled/viewed - were their herbal remedies? My guess is that it was often contributed to women's "hysteria," as some doctors today still like to do.

Still, it would be fascinating to know more. Too bad that's unlikely, because, as we all know, vulvodynia isn't a REAL disease. </sarcasm> XD

Hello everyone.

After finally getting referred to the hospital to see a gynaecologist she booked me in for a vulvar biopsy, which I had on Tuesday. It was not a good day. I had been told I was having the biopsy under local anaesthetic but a nurse came and freaked me out by talking about putting me under because she hadn't read my notes. Another nurse then ran me through the procedure and said that if they saw any problems with my Bartholin glands they would just whip them out for me. She also made a note on her sheet about "possible cosmetic alteration and damage to surrounding structures". They then left me to brood on this for four hours before I finally had my surgery, which was just a biopsy under local, as I had previously been told. Thanks, nurses, for putting me at my ease.

Anyway. I had stitches, and they said they put a gauze over it which would emerge of its own volition. I took yesterday off work and took a warm salt bath and had started to feel better. Today I went back to work but by lunchtime I felt dizzy, sick and shaky, and had started to feel sore again. So I have reluctantly come home, and can only assume that my body is still mad at me for letting the doctor attack my privates.

I am still bleeding a little and am sore and swollen, so much so that my partner says he can't even see the stitches or the gauze (which is yet to appear, which is a little worrying).

I wondered if anyone else has had vulvar biopsies and whether you could tell me how long it took you to heal, if you found anything that helped with the pain, etc? I feel like I got nothing in the way of aftercare advice from the hospital and would appreciate hearing experiences of people who have actually had it done.

Anyone read Dr. Lissa Rankin's book  What's Up Down There? yet?

Hey ladies! I may have found a cure.

I've tried just about every treatment for VVS that's commonly used except for the tricyclic antidepressants just because I've never been cool with the mental side effects they have. I know other women have had this issue with them as well and talked about it on this forum--we just can't afford to be drowsy and loopy all the time.

So my doctor, whose name is Ronald Meltzer, recently proposed a new treatment that is apparently gaining popularity in his practice and at the University of Michigan (where a lot of the leading vulvodynia research is being performed). This treatment is what he called a "2% 2% cream". That is, it's 2% amitriptyline cream and 2% baclofen in an extremely hypoallergenic base of some kind. He called it into a compounding pharmacy since no one just makes the stuff and it was kinda pricey. It was $50.00 for a small bottle with my insurance. However, this small bottle will probably last me between 3 and 6 months (if I even use it that long) because you use such a small amount for treatment.

The treatment is simply using a small dab of this stuff (and we're talking a really small dab) on the vestibule each night before bed. I was skeptical about the side effects, but honestly I only find myself feeling just a bit drowsy in the mornings after I take it, but it's very minimal compared to taking amitriptyline orally.

Anyway, I've been taking this for a week, and my pain levels have significantly decreased. It actually hasn't even been as slow of a process as I thought it would be. After the first night that I took it I poked around down there and discovered that my pain levels had already decreased noticeably. One week in, about an hour ago, I had sex with my boyfriend and it wasn't even close to as painful as it used to be. It still hurt just a bit, but barely. And that's only a week in!

I'm pretty excited. I may have found my cure, though I'm remaining skeptical just to be on the safe side. We'll have to see how this progresses, but I'll be happy to post my progress with it here. And if you'd like to try it, which I'd recommend if you're like me and don't want to use the oral medications, talk to your gyn about it. You can even call mine to ask about it (Meltzer is a leading researcher in the field of vestibulitis). Just google Ronald Meltzer and you'll get all his info. His office is in downtown Chicago.

Okay, that's all for now, but I'll keep updating you on my progress. I just wanted to share this treatment in case anyone else might find it helpful. :)

Hey, are any of you new yorkers? Can you recommend a good gynecologist with experience treating vulvar vestibulitis in the city?

I know a lot of talk has already floated around on this community about going off of HBC, but I'm curious about people's experiences of going back on it after they've been off.

Here's the thing: I got VVS last October. I went off of HBC in the beginning of March (5 months ago). I haven't noticed that my VVS has gotten any better since going off of HBC (and I had been on it for two years, since I was 22 years old). In fact, my symptoms seem to have gotten slightly worse. I actually developed a small amount of clitoral pain/soreness several months after getting off of the pill. I don't think that being on the pill led to me getting VVS--rather, it seemed to have been caused by a severe yeast infection.

I wouldn't even bother wanting to go back on HBC except for the fact that it actually improved my life in a lot of ways. I struggle with insomnia, and for whatever reason being HBC seemed to help with that a lot. Also, while on the pill, I never had acne, I didn't have to worry about contraception (quite frankly, condoms are just uncomfortable for both me and my boyfriend, and I'm not okay with the idea of getting an IUD).

I used to be on Loestrin (which is a low estrogen, high progesterone pill--the kind that some studies have shown could possibly, MAYBE have something to do with developing VVS) and I'm considering going back on and starting with Ocella (recommended to me by my doc), which is the generic of Yasmin. Anyone have experience with this? Has anyone gone back on HBC after going off and had their symptoms get way worse or way better? Any help would be appreciated.

I hope this is allowed, if not I will delete it.

I will put this under a cut, since it's got some NSFW wording. ( Read more... )

I have two questions.

First, birth control pills. D: After stopping Seasonale for a few months and going back on them because my vulvodynia got worse, the pills seem to have stopped working. I NEVER had spotting on them before. Now, I have spotting - more like an actual period - every freaking day. The only other pill I've ever been on is Yasmin, which I actually suspect caused my problems in the first place, so there's no way I'll go back on that. I need a continuous birth control, because menstruation makes my interstitial cystitis and VVS SO much worse. What pills are you girls on, if any? I'm not sure what to do. Keep waiting it out (its been over 6 months already on Seasonale, though) or attempt to switch? But I don't know what I would switch to...

Secondly, I'm wondering how you girls deal with itching. My doctor gave me a steroid cream, which I use whenever the itching gets bad, but I dislike steroid creams. They're not safe for long term use, and they can damage the skin. So I'm wondering if there's a different prescription cream I could ask for, or something I could pick up over the counter.

<3

Newer Post:

Okay, guys. I've made further research and discovered that I've got two tiny bits of white stuff underneath my clitoral hood, I think it's smegma. It's basically fused to my clitoris and the far back recess of the hood. I think I've read about smegma removal on this community before, but how the hell do I get rid of this stuff? It's like superglued on and it really hurts to poke around at my clitoris. Any suggestions?

Older Post:

I know I've heard a few women mention this here before, but do any of you have experience with a weird, vague clitoral pain? I've had VVS for about six months now, but recently my clitoris feels more sensitive on the left side, which is also the side that's worse for the VVS. It's not exactly painful, just really really sensitive. Sometimes when I'm not even touching it, I can feel this weird pressure there that's sort of like a throb or an ache, and it feels like it extends into my abdomen a bit.

Anybody else have this problem?

Hey Ladies!

Like most of you I've been reading a lot about VVS and thinking about how it started in my body. When I first started having symptoms, I was going through a few very difficult emotion experiences, and I think this may have been part of the cause of VVS.

In addition, since the VVS symptoms have started up, I've had other weird things happen. In the six or so months since I developed VVS, I've also had:

-random itchy hives on random places on my body (especially on my neck and jawline)
-random pain in scar tissue from an old sports injury
-an MRI showed that I'd developed bulging discs in my neck, which have subsequently been pretty painful
-random nausea that would come and go

I've been to a lot of doctors and they all say I'm fine, that my blood work doesn't show any hidden cause for all of this stuff. The thing I'm curious about here, then, is what caused all of these things to suddenly happen all at once.

I'm a pretty stressed out person most of the time, as a working graduate student, and that stress has increased this year due to it being my final year. (In about a month I'll graduate and begin my job search, which is also exciting yet stressful.) I'm wondering if the increased stress has something to do with all of these things happening. At first I thought my immune system must have been affected, because of the increased number of yeast infections I had around the onset of my VVS symptoms. But honestly? I've been sick less often this year than most years, in terms of catching colds and/or the flu. My other thought is that the stress may be affecting my hormone levels, which is then causing me to have random nausea and hives and things (since hormones regulate EVERYTHING). Anyway, I'm also considering the possibility that increased stress has caused inflammatory problems in my body, which could also cause hives and the bulging discs to suddenly get much worse and...vestibulitis.

I guess that's a bit ramble-y, but I'm curious if any of you had similar experiences with other random health issues when VVS popped up. I guess I just feel frustrated that the best conventional medicine can tell me is to try a bunch of random stuff that might work or might not, and that anything from low levels of estrogen to an allergic reaction may have caused my VVS. It just seems to me like...if they can do open heart surgery...if they can remove brain tumors...can't they figure this out?

Anyway, that's a whole different rant. I'm doing marginally better with my symptoms thanks to emu oil, estrace, getting off HBC (though it's only been a month so far), and relaxing a bit. I still struggle with feeling frustrated about all this, and trying to find answers.

That said, did any of you have an onset of other health issues when you got vestibulitis, and what do you think, overall, caused your symptoms to begin (if you have secondary VVS, that is).

Hey Guys!

So I just got back from an extremely relaxing vacation in Puerto Rico. It was one week long, and the weather was beautiful, and I went swimming in the ocean everyday.

And...my vestibulitis symptoms went way down. I had sex several times during the vacation with my partner, and every time there was virtually no pain at all. The first night back home (in Chicago) was a different story. It hurt just like it used to. So, I'm wondering...what caused this? Some ideas:

1. Warm comfy climate. I'm usually too cold ALL THE TIME in Chicago, so maybe laying out in the sun and being warm calmed my body and made the symptoms lessen.
2. Humidity. Puerto Rico is tropical, and Chicago is extremely dry.
3. Salt water. I swam in salt water everyday, and I'm wondering if all that rinsing helped to keep the area free of irritants, and I'm also wondering if the fact that it was salt water specifically helped...
4. Less clothing. In Chicago I wear underwear with either tights (with the crotch cut out), leggings, or pants most days, while in Puerto Rico I wore just a swimsuit or underwear and a sun dress or skirt. Perhaps the area was able to breath better.
5. Less sitting. In Chicago I work a desk job, but in Puerto Rico I spent a lot of time laying on the beach and running around, swimming, and playing volleyball.
6. Vitamin D. I actually thought that my symptoms might, MIGHT be getting a little better before I left for Puerto Rico and I wasn't sure why, but now I'm wondering if it might be due to the fact that I was tanning before I left. I also tanned a lot while I was there. Could vitamin D have some helpful effect in fighting vestibulitis?
7. Relaxation. Quite simply, I was way more relaxed while on vacation that I am in my everyday life.

These are just some thoughts. It's pretty sad to be home after a wonderful vacation both from my day to day life and from vestibulitis, but I'm struggling through. Have any of you experienced similar effects from vacation, or do any of you have any thoughts on these ideas?

Hey chicas. I'm wondering if any of you have tried using emu oil, if it worked for you, and what brand you used. I saw some older posts on this blog about it being really great. I've been using this: http://www.proemu.com/ brands for about three days now, and I haven't really noticed a huge difference. My emu oil is more like a cream (it has vitamin E in it too). What's yours like?

Thanks for the help!

Also, just talked to my doctor and he wants me to try a cream that is 2% amtryptaline (or however you spell the anti-depressant medication they ask us to use) and 2% muscle relaxer. Anyone out their tried it? Thoughts?

To make a long story short, for over 4 months now I've experienced unexplained new symptoms, including:

Abdominal burning or mild, crampy pain
Burning in my lower back or mild, aching pain
Pelvic bone/hip pain right on the bone on both the right and left

I made the mistake of wearing jeans today, and oh my God everything is so much worse right now. Hurts, hurts, hurts.

X-rays, blood work, and an ultrasound didn't show anything.

I'm wondering if anyone has experienced any of these symptoms. My doctor didn't think they were related to my interstitial cystitis or vulvodynia, but I don't know what to do. She suggested I see a neurologist, which I will probably do once we have health insurance again in a month or so (my dad just got laid off, and we'll start paying for COBRA soon if he doesn't get another job). I'm just so frustrated and tired of this. I'm studying abroad in the Fall - I want this resolved as best as possible! ;_; I've been trying acupuncture, but it seems to be getting less and less effective...

Does anyone else get a lot of itching in their general vulva area? I've got run-of-the-mill vestibulitis, but I definitely also have sporadic itching that is intense for a few seconds and then goes away. I figured that it's just a complication of the syndrome, but I thought I'd see what your experience with it has been.

I've been going to the doctor regularly to make sure I'm not getting infections (as a string of yeast infections may have caused all this in the first place) but he says there isn't anything he can find.

Hope you all are doing well!