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» Lichen Sclerosus
Yesterday at 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

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: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


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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