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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 …

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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 …

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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

Which birth control should I choose to be on that won't make my Vulvodynia worse?

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Which birth control should I choose to be on that won't make my Vulvodynia worse?

Post  Olivia D on Tue Jun 12, 2018 1:31 pm

Hello all! I am new here. I would like some advice. I was diagnosed with Vulvodynia when I was 17. After a year of mental anguish, doctors telling my mother I am mentally ill and what not, needing a therapist, looking for attention, etc. I was finally heard and directed to a vulvar clinic. I was diagnosed with Vulvodynia and Vulvar Vestibulitis. I was put on Gabapentin 3x a day 900mgs. It actually worked and I had no problems, went off of it for like two years and it came back with a vengeance. I lost my virginity when I was 21. It actually didn't hurt, and I was fine, up until I started the Depo shot. Sex became very PAINFUL!!!! I wanted to cry, I felt intense burning and pain, the whole nine. I noticed it was when I went on Depo that sex became painful and it came back and has stayed with me. i can't take gabapentin anymore because for some reason my body doesn't do well with it. I get so nauseous and I eat with it. I puked so much from it. I use to take that on an empty stomach and have just drowsiness, but obviously my body doesn't like it now Sad No matter what I do! Sad

So, this may seem crazy, but I felt I had more flare ups and more pain being on Depo. It's also weird because I feel like I need a period. When I got my period I actually felt "relieved" with my vulvodynia. For some odd reason my pain would come about like a week before my period, but when I got it, everything was fine and normal again. I asked my doctor what other BC methods would work, but they keep saying just because I was on Depo doesn't mean the Nexplanon will have the same side effects. I feel it would because it's progestrone, and Depo is the same thing. I don't know if Nexplanon will be better? Or if I need a BC that will produce a period? Like the pill or the patch? I tried the copper IUD the one with no hormones in it, my body rejected the IUD and it was extreme cramping that I couldn't deal with. Unfortunately that didn't work out to my favor because that would be the best option.

What do you suggest? And do you think my theory is crazy that maybe birth control makes your condition worse? I don't know what to do, and the doctors who specialize in this don't seem to answer my questions, so I will go to my fellow sufferers of this condition and see what you all think. Thank you so much for reading, and you have my deepest sympathy and love for dealing with this horrid condition. Xoxo.

Olivia D

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Re: Which birth control should I choose to be on that won't make my Vulvodynia worse?

Post  emalita on Tue Jun 12, 2018 4:08 pm

Here's a good article I had read in the past about the pill and its hormone destroying connection (don't worry, it's not written by Dr. Oz).


Many women find a link between hormonal birth control and vulvodynia. So honestly, I wouldn't recommend any of them if you've had issues in the past.

You mentioned you can't take Gabapentin anymore, but have you tried it as a compounded cream (non-alcohol base) that gets applied directly to your vulva? That's how my gynecologist wrote my Rx for it (I never used it though for other reasons I won't go into here).


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