vestibulitis, you say...

[defgoddess.livejournal.com]

Well, I went to the doctor and was told I have vulvar vestibulitis...

So, despite having had dyspaurenia (painful sex) upon entry since I first attempted about... 6 years ago now, when I recently went to the GYN (been almost 2 years, I normally go every year but no more insurance ._.) and was diagnosed with vulvar vestibulitis it hit me pretty hard.  I've been extremely depressed and prone to random bouts of crying.  The condition was not new to me, as I'd come across it rather frequently in my research for my issue, but it was still difficult having the doctor say it so definitively.  Currently I'm taking Diflucan (aka fluconazole) and using Nystatin (an antifungal ointment) but I've seen no improvement thus far (not that I was really expecting that).  I think if anything my girl parts are even angrier, it feels drier and chafe-y.

As anyone with this condition or similar knows, doctors can really suck the big one.  I can't tell you how many I've seen in the past that have flat-out not listened to me.  The doctor I am currently seeing seems to be a lot better, but I have my doubts.  Part of it is because of my distrust of doctors, part of it is because of what transpired during my visit.  I had the typical erythema (redness caused by inflammation) at 5 and 7 o'clock on the vestibule (entry area of the vagina), although I read on one site that this is not necessarily an indication of VVS.  I had some minor discomfort with that super-sweet Q-tip test, but he was pushing pretty hard on one side.  I explained how I had been on BCPs since I was 14 (I am now 23 but stopped the last pill in Sept. 08), first several different combo pills, then most recently the POP (progestin only pill), and had found that being on these pills can disrupt your hormones and lead to a degree of vaginal atrophy.  Though, I said, my problem is moreso the posterior fourchette--the 6 o'clock spot on the outside of the vestibule (like the 'skin' part rather than the mucosa) tears every time and it is supremely painful.

He sort of ignored the birth control pill/hormone idea I put forth, as well as the outer tearing, and suggested (I wrote on my forms that I would like to discuss BC) that I take Yaz.  Um... what?  I asked if that would exacerbate my condition, and he said no.  Now, I do realize I don't have an MD or PhD, but I can't tell you how many hours I've spent researching this.  I have read a few accounts from others suffering VVS that they had trouble getting their doctor to accept the hormone/pill/estrogen issue.  I'm perfectly willing to be wrong, but with this kind of condition I feel like no stone should be left unturned.  Seeing as how I was on the pill for 4 years before I tried to have sex, I'd think that would be long enough for it to mess with my hormones.  The last doctor I went to that prescribed the POP (most likely not knowing of its potential to exacerbate atrophy) was going to give me estrogen cream after I tried a 'home remedy' sort of thing first.  I kind of regret not getting to go back to her :-\

So, I'm not really sure what I am asking here.  Heh.  I know there's been other posts on this topic but I'd hope you would not begrudge me mine.  Staying up til 2 am researching and crying and feeling hopeless is not fun.  I want to keep moving forward and stay positive.  I have another appt with this doctor in less than 3 weeks, so I may update again then.  I guess at this time I will probably end up having to see another doctor.  I plan on moving late next month so I'll have to investigate the upstate (eastern) NY area.  I wouldn't mind tips on that either.

I guess any advice or words of encouragement (ie 'doctorz suxx,' will accept that, lol) would be helpful at this point.  Sorry for the slightly didactic quality to my post, I thought if someone were reading this that isn't familiar with the condition and its related terms, that they'd appreciate some extra info.

Much love, from my vagina to yours.

Comments

[fleurlur.livejournal.com]

I have the same problem with the outer tearing everytime, I can't figure out what's causing mine :(

[defgoddess.livejournal.com]

You are more than welcome to chat if you want to talk about stuff :) Someday I'd like to be a success story to help other people with similar issues.

[tisha313.livejournal.com]

I am so sorry to hear about your condition. I think I read a little bit about this can you explain exactly what it is?

[defgoddess.livejournal.com]

Vulvar vestibulitis is a condition which causes redness and pain of the vestibule. Vestibulitis is an inflammation of this skin and the mucous secreting glands found in the skin. Vulvar vestibulitis may include all the area around the opening of the vagina but is normally seen in the lower part of the vaginal opening.

* Severe pain with pressure (for example: biking, exercise, tight fitting clothes ).
* Vaginal entry such as tampon use or intercourse.
* Burning, stinging, irritation, or raw sensation within the vestibular area.
* Vestibular redness
* The urge to urinate frequently or suddenly.

-cribbed from one of my bookmarks. Basically the "entry area" of the vagina is angry and doesn't play well with others. "Keep Out" sign and everything. hehe.

http://www.aafp.org/afp/990315ap/1547.html I've found to be a very good article (a bit on the old side, now, but after looking at so much stuff it's still useful).

[pinkdramon.livejournal.com]

Yeah that'll happen. All of it.

There is some limited scientific journal article evidence suggesting that hormonal birth control pills can cause or excacerbate VVS. Still not entirely sure why some doctors resist this idea. I have one or two articles on my computer if you need the evidence yourself.
Meanwhile, I & other women are the anecdotal evidence. I know that Yasmin was, not helping the VVS. A hormonal blood test revealed that, after being on it for 2 years, my hormones looked more like a premenopausal woman's, than a 20-something's. I went off the pills, used a topical estrogen/testosterone gel, custom-made just for me. A subsequent hormone test revealed my hormones reset to back within normal range.

I am now dreading menopause.

I had issues with my posterior fourchette as well. It would tear & bleed if I tried to have sex, which was of course painful due to the VVS & also vaginismus going on. I wound up getting the vestibulectomy treatment for the VVS, which also addressed the fourchette - because during surgery, since my posterior fourchette was a POS, the surgeon removed it. It has not caused me a problem since. Surgery isn't the best option for everyone but for me it worked out fine so far. Be careful, there are risks!

Before getting the surgery I tried smearing pure vitamin e oil into the vestibule & fourchette. Pregnant women do that before giving birth, in hopes of reducing the odds of tearing during birth. I don't know if it would have worked for me or not.
The other alt is to just let it keep tearing & healing over & over again which is what my elder sister did... ehhh it worked for her I guess but that held just absolutely no appeal to me.

You may now be interested in support groups & books about the topic. We have vvs_community on LJ, and Yahoo! Vulvodynia. (http://groups.yahoo.com/group/vulvodynia/)

There are an assortment of Vulvodynia related blogs on the intertubes now - search Blogspot & Wordpress & you'll find them.

Recommended reading: The V Book, (http://www.amazon.com/Book-Doctors-Complete-Vulvovaginal-Health/dp/0553381148/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1239840993&sr=8-1) Vulvodynia Survival Guide (http://www.amazon.com/Vulvodynia-Survival-Guide-Overcome-Lifestyle/dp/1572242914/ref=sr_1_1?ie=UTF8&s=books&qid=1239841026&sr=1-1) - be warned! These books are 7 years old now, so there's been additional research in the mean time. But good to start with! Camera My Mother Gave Me (http://www.amazon.com/Camera-My-Mother-Gave-Me/dp/0679763430/ref=sr_1_1?ie=UTF8&s=books&qid=1239841077&sr=1-1) which no one seems to understand unless they've been there. Heal Pelvic Pain (http://www.amazon.com/Camera-My-Mother-Gave-Me/dp/0679763430/ref=sr_1_1?ie=UTF8&s=books&qid=1239841077&sr=1-1) takes a physical therapy point of view. In my experience PT is awesome for this sort of thing, but ONLY AFTER you get the immediate symptoms ~mostly under control through whatever means necessary.
Also, I completely love this book: Spectacular Sex (http://www.amazon.com/Dr-Sprinkles-Spectacular-Sex-Experts/dp/1585424129/ref=sr_1_1?ie=UTF8&s=books&qid=1239841220&sr=1-1) for a gentle reminder that yes you are still cool.

[defgoddess.livejournal.com]

Yeah, I actually have several articles bookmarked on my computer about it. I've read a great deal from the CVVD and there seems to be no question that HBC can cause these problems. I'm not trying to be one of those crazy "bell peppers gave me AIDS and you can't convince me otherwise" people, I've just done a crazy amount of research. Hundreds of articles don't lie (at least, I don't think so...)

I've read most of the Blogspot and Wordpress blogs, I did see the VVS community but as I was already a member here I figured it would be relevant here as well (plus perhaps someone else may find it useful).

I'm glad that, while you had to go through to the sort of "last step" of treatment, you finally found some relief. It is definitely heartening to read people who have triumphed over this crap. And yes, I do say triumph because I don't think anyone realizes the incredible emotional toll it will take on you. It pretty much destroyed a relationship for me already, and I don't want that to happen again.

Grats and much thanks for the support :)

[ktnzgtklws.livejournal.com]

But don't you know that all women not only WANT to be, but love being on HBC? I solves ALL problems, and causes NONE!!11!!1!
/sarcasm
;-P

[guloninae.livejournal.com]

I second the recommendation for The Camera my Mother Gave Me. I have it on audio tape read by Suzanna Kaysen herself, and it's a great, albeit infuriating, book. I still count how long it takes me to pee..

From what she said in the book and from the frustration that you're having as well, I think it pays to 'shop around' for a good doctor. I know they are rare, but I truly hope you find one who will listen to what YOU have to say about YOUR body. You're the one who knows yourself the best after all.

[skeas.livejournal.com]

I posted here last year about my wonderful consultation with my gynecologist about birth control.

Recap: My doctor put his elbows on his desk and looked me straight in the eye, smiling largely. "So, you're looking for a new birth control pill," he began.
"Yes and I was thinking--"
"HAVE YOU TRIED YAZ?" he screamed. As he yelled these words, fifteen dancing girls in brightly colored bikinis with nicely curled hair danced into the room. "DID YOU KNOW THAT YAZ CAN HELP YOU WITH PMDD?" Several bluebirds flew in the window and began whistling a cheeky background tune. "YOU SHOULD NOT SMOKE WHILE TAKING YAZ," he concluded.

I think that Yaz must have some very wonderful drug reps who are fantastic at wining and dining doctors, because I know a lot of people with similar Yaz horror stories. I am so sorry about your diagnosis and about your difficulty finding a doctor. I can't imagine what you are going through (luckily I have no pressing need to get a better gynecologist, beyond the fact that mine doesn't deserve to see my vulva once a year). I hope that things start looking up for you, and I'm sending e-hugs!

[defgoddess.livejournal.com]

LOL, lovely tale there :)

I thought it was quite odd to be pressed (well, he wasn't quite as colorfully insistent, by any means, but still) to take a particular namebrand pill. I've usually gotten generics, and the previous doctor I mentioned just said "yes the minipill would be good for you." I guess that's the difference between HMOs and private dr's...? But yeah, I didn't even bother trying to bring up an IUD... "Pick your battles" I believe is the adage. I do have bad cramps and a couple other issues at that time, but they are definitely not bad enough for me to go back on any pill (not while I still believe they have caused my current issues). So did you succumb to the wily charms of Yaz or were you able to get something else? I think I'm just going to offer to partially fund my bf's vasectomy :)

I frankly am quite GLAD that you don't have to experience any of the BS. I'd never wish it upon anyone ever. Thank you so much for the support!

[atalanta0jess.livejournal.com]

I think there's actually only one brand of minipill available in the US at the moment. NOt terribly relevant, but just FYI. :)

Good luck...maybe after a hefty dose of doctor-shopping you'll be able to find someone who can help you deal with this in an actually productive manner. (God, I hate doctors sometimes)

[defgoddess.livejournal.com]

Micronor, Nor-QD, Ovrette, Nora-BE, Jolivette... haven't taken any of those personally, but those are a few brand names of POPs. I actually looked at mine (still have the old box for some reason) just now, wasn't actually the minipill... and I was told it was... -_- lol so yes, seconded on the hating doctors. I guess I shouldn't be surprised, she told me Mirena caused heavier worse periods as I sat there with the brochure open to the 'most women have no period after awhile!' page. Sigh sigh sigh.

[atalanta0jess.livejournal.com]

For some reason I thought only micronor was available in the US...but obviously I'm wrong. Thanks for the correction! :)

[defgoddess.livejournal.com]

Haha, trust me, I've learned my lesson. I actually wanted to be a doctor for most of my life, somehow I ended up with a lucrative BA in English. I still maintain a healthy interest in a lot of medical/health-related stuff. I have some scars from an appendectomy that honestly I should've sued for malpractice... I tried telling the 5 doctors that examined me and practically punched my stomach repeatedly that I had E. coli, not appendicitis... they didn't listen. I've never encountered a doctor that actually diagnosed me themselves, either they agree with me, they give me something, I get better... or they ignore me, don't give me anything/give me useless stuff, and I stay crappy. I can definitely imagine that with something like cancer, you'd want every bit of knowledge you can get. It is so much easier to handle when you actually know what's going on!

[stariiangel.livejournal.com]

I have the same condition, and am currently on the nightly lidocaine and steriod treatment, plus PT.

And I'm also shocked that that treatment is anti-yeast medication. It just doesn't seem to me that it's going to solve any of the problems...

[defgoddess.livejournal.com]

Yeah, I don't really think so either :) Basically so far it's just been, "switch to using baby wash, get a handheld shower head to rinse off with, pat dry, and here's some yeasty stuff." Pretty sure none of that will help, but most of it won't hurt. Just hoping they'll see it hasn't done jack shit and will get something a bit more effective. One can hope.

[kiteless.livejournal.com]

My experience is this: I've been on and off HBC enough to know that for me, at least, HBC had nothing at all to do with my VVS. I wasn't willing to try nortriptyline because tricyclics do bad things to me. Relying on a topical numbing gel didn't make much sense to me. Bio feedback didn't help because pelvic dysfunction wasn't the problem. I opted for a vestibulectomy and I am so happy I did. The recovery wasn't fun, but it wasn't that long either. It isn't for everyone, but I don't think trying treatment after treatment is worth it either. I spent 31 years of my life with an ouchie vagina and I didn't want to waste any more time.