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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 1

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 8

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

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.


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

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