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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 4

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 0


My story - VV since 2009

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My story - VV since 2009

Post  stephsue on Sun Dec 25, 2011 4:42 pm

Hi everyone -

I've been lurking on this forum for a bit now but didn't join until recently. Just wanted to share my story and see if anyone has had similar experiences/can offer advice/etc. It's probably going to be a little long but I'll try to keep it organized. :-)

I went on Yasmin when I was 20, which is also when I first had sex. For about a year and a half I had no problems with sex. I met a long-term boyfriend during that time and we had a very healthy sex life and I never had ANY pain or problems whatsoever. Then after graduating college I went directly to law school, which was a terrible fit for me (wound up dropping it halfway through the first semester to pursue something in the sciences which is much more up my alley). During that time I was very stressed and I had a couple instances of painful sex and feeling as if I had a UTI afterwards. I think what happened next is something probably a lot of you have gone through - I was treated repeatedly for UTIs and yeast infections only to find out later on that there was really no confirmation that I'd had either of these things. (This all started around December 2008/January 2009).

In early 2009 I lived at home and was working/taking a class and spending most of my free time and money trying to figure out what the hell was wrong with me. My doctors in my hometown were not very helpful - my gyno was actually positively awful (and she is the one who initially put me on Yasmin w/ NO mention of any risks/side effects which my current doctors are now horrified by). I also saw a urologist for a long time and everyone seemed to be leaning toward a diagnosis of interstitial cystitis, but did nothing to either rule it out or confirm it. I finally was referred to a urogynocologist by my PCP who did a potassium sensitivity test, which ruled out IC (though I *did* have bladder inflammation for a long time) and did a q-tip test and said I had vulvodynia/vulvar vestibulitis. At that point I also sought out a specialist in NYC (it was not Goldstein, though I cannot remember what their name was...). He gave me valium suppositories to try to relax the muscles in that area (didn't seem to help much with that, they just made me fall asleep easily at night!) and referred me to a PT in the city. At the time my insurance wasn't great so I literally spent almost all the money I was making on physical therapy and commuting back and forth to go to it. I definitely have a LOT of muscle issues (my hips are misaligned, a lot of tightness in my legs/hips/abdomen) so I think PT made a lot of sense but I couldn't afford to go often enough to really make much of a dent in things.

In the fall of 2009 I moved back to Boston and moved in with the boyfriend at the time. By this point we had basically stopped even trying to do anything sexual. While he was supportive in that he would go to doctor's visits with me when he could, talk to me about things, etc. I think on some level he felt that he had somehow caused this. He became really hesitant in bed, basically treating me like I was going to break and never trying to initiate anything, and while I could understand this it was also a turnoff as my sex drive was already low and now I felt like my boyfriend didn't really want me. Anyway in Boston I got set up with a new PT and my insurance there was able to reimburse a good portion of the visits. However, I really HATED going - she was very old and for whatever reason that creeped me out going to this old woman for sexual issues. I was much more comfortable with the PT in NY who was closer to my age and was easier to talk to. I also noticed very little difference w/ the PT in Boston and she didn't really seem to have a set gameplan for my treatment, which for me is very important so that I feel like things are going somewhere and I understand her plan. So long story short, stopped going there.

I then got referred to Elizabeth Stewart's clinic (this is probably early 2010) where I saw an NP who was great - however, I don't have a car and that clinic is outside of the city so I had to rent a car and drive to go/take a half day off work just to go/etc. They gave me steroid topical cream for the vulvar areas and suppositories to insert. The suppositories didn't bother me but I couldn't tell if they were doing anything, and the steroid cream definitely stung a lot so I stopped using that. They also gave me lidocaine, but I never tried it since my boyfriend didn't seem able to try having sex with me... He basically had the attitude that we would have to wait until things were completely better while meanwhile I kept going to doctors who were asking me if I'd had sex yet.. when really it was much more complicated than that.

So at this point (2010-2011) I've been on the Yasmin the entire time, tried a few treatments/PT, have not tried doing anything sexual, now have no sex drive and basically decided that I was sick of spending so much time/money/energy thinking about my vagina when I have better things to do. So for awhile I just didn't think about it (which actually made the day to day pain better b/c I wasn't focusing on it at all). Along the way I started to realize that I wasn't super attracted to my bf for reasons OTHER than the VV, and that there were a lot of incompatible things between us.

In fall of 2011 I saw a naturopath a couple times who suggested an anti-inflammatory diet (which I think is a good idea in general, and especially in my case as I've had bladder inflammation, my vaginal tissue is inflamed, and my inflammatory markers on my blood tests are slightly elevated). She also gave me a bunch of supplements. It was too expensive to keep seeing her, and I don't think anything she suggested will be a magic bullet for the VV but it WILL all help improve my health overall, so I am going to try to stick to it all more that it's the new year. I also finally got off the Yasmin at the end of August, which caused my hormones to go absolutely haywire and sent me into one of the worst episodes of depression I have ever had. Along the way I also got my vitamin D tested (myself.. my pcp refused to check.. have really found some charming doctors along this journey..) and learned I have a pretty bad D deficiency which has probably not been helping my mood. So this fall basically sucked though the depression has started to get better with treatment.

Up to the present - the boyfriend and I broke up after Thanksgiving, which was actually a huge relief as we were both very unhappy. I am actually really excited to start dating again, BUT with this breakup I am now feeling much more concerned about the VV again (which in turn I think is making it flare up a bit from stress) as it is obviously a complicated thing to bring up with a new guy. I know that is a bit down the road and I am not looking to jump into bed with anyone really fast, but it is stressing me out. Since going off the Yasmin too my sex drive has really improved and (forgive me if TMI) I've actually been feeling horny again.. pretty frequently. Probably the fact that my boyfriend basically refused to touch me for over a year has me a little starved for physical affection too. I also thing things are a bit less dry in that area BUT I am still having pain, and some flareups around my period.

I have an appointment with a new PCP on Jan 9th (obviously he may not know a thing about VV, but he is supposed to be excellent and I could really use a good PCP as kind of a home base doctor to help coordinate care) and I plan to make a followup to go back to Dr. Stewart's clinic and try more things there. They had said I should probably go back to PT which I REALLY don't want to do, but I am starting to feel a renewed will to really attack this thing from all angles. I am also starting cognitive behavioral therapy for anxiety and depression (though I am hopeful that when I see my new doctor and can correct the vit. D deficiency/do a proper differential diagnosis for any other medical causses that this may help a lot). Unfortunately after the breakup my financial situation is also worse b/c living together definitely cut a lot of costs... So I have the added stress of being able to pay for all the medical stuff, but I am fortunate at least to have good insurance through my job.

I should mention I am also supposed to be studying for the MCAT right now/applying to med school this summer, but I am considering just meeting with my advisor and leveling with him about everything and seeing if I should maybe put it off another year. I know that added stress doesn't help this condition, but then again at the same time it makes me feel really resentful to put my life on hold because of something like this..

So, if you've made it this far, THANK YOU for reading! Even if you don't, feels good to get it off my chest and out there... I guess the biggest thing I kind of want advice on now is... if I meet someone and it is going well I know that I am going to really WANT to have sex (after awhile, it's not something I've ever rushed into with anyone) but how do you just go ahead and try when it's been so long and have NO idea how much it will potentially hurt? Thank you SO much for reading and for any responses.
-S

stephsue

Posts : 5
Join date : 2011-12-24
Location : Boston

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