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» I don't know what to do anymore
Sat May 26, 2018 5:21 pm by Aquaben

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Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

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

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: 5

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

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


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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Location : USA

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