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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

Comments: 0

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1


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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