Vulvodynia Support
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» Hope to all my suffering ladies
Growing up Clueless EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Growing up Clueless EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Growing up Clueless EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Growing up Clueless EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Growing up Clueless EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Growing up Clueless EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Growing up Clueless EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Growing up Clueless EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Growing up Clueless EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


Growing up Clueless

2 posters

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Growing up Clueless Empty Growing up Clueless

Post  orangelight 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

Posts : 3
Join date : 2016-04-14

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Growing up Clueless Empty Re: Growing up Clueless

Post  emalita 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

Posts : 249
Join date : 2016-03-29
Location : USA

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