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» 7 months since the diagnosis
Thu Aug 16, 2018 9:09 am by Gaby

» Did going off antidepressants cause this?
Wed Aug 15, 2018 2:08 am by ryn207

» Sex after vulvodynia (husband edition)
Mon Aug 13, 2018 12:15 pm by emalita

» burning sensation and small cut? Maybe thrush?
Sun Aug 12, 2018 8:24 pm by emalita

» can v return after vestibulectomy?
Sun Aug 12, 2018 12:01 pm by Alana3

» Cleveland Clinic - Pain Management, Weston, FL
Sat Aug 11, 2018 12:37 pm by Alana3

» Hurting, Burning, Itching, and Worn Out
Fri Aug 10, 2018 7:55 pm by fairlight10

» GREATFULL FOR THIS WEBSITE
Thu Aug 09, 2018 8:37 pm by Nicola Jost

» Can you guys tell me your experiences with diflucan/Fluconazole?
Tue Aug 07, 2018 6:01 am by Guest

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 1

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

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

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

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: 10

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

Hi,

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


Growing up Clueless

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Growing up Clueless

Post  orangelight on Thu Apr 14, 2016 10:02 pm

I first found out that I had severe pain when trying to have sex on my wedding night. Yes, that's the first time I had ever *inserted* anything in my vagina, and now about 6 years later I'm still the same.

I'm 29 and since I grew up in 5 different countries, there wasn't much about sex or tampons or in the way of sex education anywhere around. Married my best friend right after college and we were both shocked that we couldn't have sex! My first thought: "oh Shit, I wish I'd gotten some sex ed or tried something with a tampon?! Do I even have a vagina?!" I guess I never thought about it before because we had fooled around a lot before getting married, and never had a problem with pleasure, sex drive, labido, etc. We were just saving the intercourse bit to make it all the more special Wink I did prepare for avoiding pregnancy, by starting YAZ birth control a couple months before I got married (it made my breasts hurt, killed my labido and made me super moody).

The first few doctors and gynecologists I saw said that I was fine, and that I was just scared. They suggested i was too anxious, or too stressed. Maybe some antidepressants may help, or anti anxiety meds. There were no infections and no yeast issues. At this point I stopped taking the birth control pills because there was no obvious need. My labido actually slowly recovered over the next couple years. They suggested wine or muscle relaxants or something to knock my consciousness out so while I was inhibited DH could just force his way in and I wouldn't react much to the pain. Luckily both him and I didn't think these ideas were too appealing. Some of the good doctors suggested dialators and using lots of lube. We ordered a set from vaginismus.com and I used it for months. I went back to the gyn office so excited to hear about any improvement. I had been putting myself through pain with dilators and just stuffing a penis in there and UTIs from making him go it while I would just bare down and deal with the pain to see if it all changed (just to experiment, never had sex that way, I would have passed out from the pain!). The doctor told me stoically, that there was nothing she could do for me, that I was still a virgin (!), my hymen wasn't broken, and I should just keep trying what I was doing, or she could give me some sedatives.

The hardest part of it all is trying to keep my sanity and marriage from falling apart. A mistake we made is mostly ignoring it for the first couple of years chalking it up to nerves or inexperience, instead of talking about it openly and how important it is to have intercourse as part of a sexual relationship. I thought that non intercourse sex would be enough to satisfy ourselves but that didn't prove to be true after a few years. Finally after our fifth anniversary came a big wake up moment, and this time around I have been pursuing help as hard and fast as I can. I'm going to hit 30 soon and i have the same fears settling in that many of you may have: how am I going to live my life like this? will my relationship sustain this? can i have children if i've never enjoyed sex before? how do i get healthier while trying to stay sane and focus on anything else in life?

I really started looking at the issue and getting familiar with my vagina, Using mirrors and cutips and the light from my iPhone Very Happy, I narrowed down the pain to the 'vestibule' right outside my hymen. I work in a medical setting so I ordered some lidocaine gel one day, and put it only on the burning parts, and had sex for the first time ever! Broke my hymen and everything. We joke that I lost my virginity finally after being married for 5 years. I consider that as one of my most proudest moments, lol. Without the lidocaine, things are the same and the pain stays around the vestibule. I noticed it gets better around the time I am ovulating.

My life view and likeliness to use medications may not match others, but I thought it was important to share the whole story anyway. I have never been part of a support group before and have fought the idea of telling strangers my story tooth and nail. I want to be honest to myself about where I'm at, there's a lot to learn and I'm desperate for help and insight, not just about the pain, but how to live life when you're at the end of your rope with this.

orangelight

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Join date : 2016-04-14

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Re: Growing up Clueless

Post  emalita on Thu Apr 14, 2016 11:50 pm

Thank you for sharing your story! The more we can be open about this horrible pain, the better educated we can be at being our best advocates!

Congrats on finally "losing your virginity" Wink  Anything that can make you smile is worth celebrating.

My initial pain that started all this mess for me used to completely disappear surrounding the time of ovulation. My current specialist said that is due to the increase in estrogen during that time. He believes it doesn't matter what our hormone results show (i.e. normal estrogen levels) because he said that has little to do with the estrogen our vaginas receive or how well our vaginas use it. He said estrogen blood tests have a huge range of what's considered "normal", and for ladies with vulvodynia, we need to be on the very high end of the specrum. He calls it a very high estrogen demanding vagina  Laughing My hormone saliva tests came back "normal" for estrogen, and I haven't been on his estrogen vaginal tablets long enough to know if he's right, but it seemed somewhat logical for me.

Since you find some relief during ovulation, I think you're on the right path looking into the hormone side of things.

Welcome to the forum!

emalita

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Join date : 2016-03-29
Location : USA

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