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» I don't know what to do anymore
Yesterday at 5:05 am by SinclairSassy

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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


My (extremely long) Story

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My (extremely long) Story

Post  e31190 on Fri Apr 22, 2016 4:23 pm

Hi guys! This is going to be a long story but if it helps someone feel like they're not alone or offers the opportunity for someone to help me it'll have been worth it.

A little background on the situation: I am 22 now, will be 23 later this year. Things started happening around October/November of 2014. At this time I had been with my boyfriend for about 6 months. I've been going to the gyno since I was 18, get a Pap smear every year, never had any STDs and I am not unusually prone to yeast infections or UTIs, maybe one infection every few years that cleared up quickly. I am still with the same guy I was with then so I've been with one partner throughout this whole process. I was on birth control. I very recently just quit taking it this month to see if it would help. (I am not advocating or trying to convince anyone to go off your birth control or anything like that. I'm just saying I feel comfortable coming off of it and I wanted to see it if helped my situation out any, which I think it has a slight bit) I had been on BC for 3 years at the time this started happening. I had no problems with it whatsoever and never switched brands or anything.

Now on to the story. I wish I had kept a detailed journal of what exactly was going on but I honestly was so scared and had no idea what was happening. I also had no idea that this was still going to be happening years later. Therefore, my time frames and memories of when exactly these events happened is fuzzy and that's so annoying because I can't seem to pinpoint exactly what may have caused this. So with that said, there are two instances I can think of what may have caused this. One, I fell down concrete steps and severely bruised my tail bone. I know some ladies on here have said their vulvodynia problems have started with a back injury so that is plausible to me. The other instance is a little graphic but my boyfriend and I were having sex. We were using a condom [side note: we use condoms almost every time even though I was on BC, if that's important to what may have caused this] We use condoms because it seems even though after plenty of foreplay we still have a harder time inserting even if I am lubricated. On this particular day I'm not sure if we jumped the gun before I was ready or what but it was especially hard to insert, different than other times. While we were inserting, he was going slow as not to hurt me but it was especially painful after complete insertion.

Around this time, the vulvodynia starts but I had no idea it was vulvodynia (still don't I guess) and so I was freaking out. It started out as a tingling feeling all over the vulva. Naturally I go to Google with all my problems and what do you think comes up if you google 'tingling in the vagina area'? Herpes. So I am freaking out, wondering how I could have gotten that and googling what else it could be blah blah blah. I had been with one person and one person only at the time but I was made aware it could lay dormant for years and then pop up so that extra freaked me out. I told my boyfriend. He was calm, told me to calm down, it's probably nothing. So days go by and I swear I looked at my vagina in the mirror at least 50 times a day just waiting for something to show up on my skin. It never does and the symptoms were still there. Then came the burning. A constant burning pain in my vagina that would not go away.

I noticed however that I felt NO pain when I went to the bathroom or when I had sex. Honestly, sex helped. I guess I was focused on other things and I didn't hurt at those times. Then as months went by with no change I noticed that I had absolutely no pain or symptoms during my period. I have never looked so forward to my periods in my life. It was the only relief I had. Naturally, my sex drive went down to about 0. I was constantly worried about what it was, I was in pain and sex was the last thing I wanted to do. My boyfriend was very supportive and understood but still he didn't and couldn't understand. I had no one to talk to until I came across this page. I've read and not participated for a good year now and I finally decided to just join and put my story out there. I still have pain but my symptoms really vary.

Sometimes I feel an inner dull ache, sometimes I feel a concentrated pain in one particular area of my vulva on both sides at different times, sometimes I feel perfectly normal. I still feel fine during period time and sex. But any other time during the day, pain. I have had bouts of pretty heavy white discharge but my discharge goes back to normal after a few days. It doesn't have an odor when it is heavy, it is just a lot. I have been to the gyno but of course 'nothing was wrong'. I know I should keep insisting something is wrong and advocate for myself but it's so disheartening. I don't want to waste money just to be told everything looks fine and that there's nothing they can do.

I try to stay positive and honestly the pain is just a part of me now. I notice it and it hurts but I try to stay positive and continue on with life as normal. Some days are much better than others. When it's especially bad all I want to do is wear baggy sweatpants and cry. I just hold out hope that one day it feels better and stays better!

e31190

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Join date : 2016-03-29

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Re: My (extremely long) Story

Post  emalita on Fri Apr 22, 2016 5:26 pm

Thanks for sharing your story!

Have you considered the conditions Cytolytic Vaginosis or Lactobacillosis? The only reason I suggest them is because you mentioned the pain is gone during your period, which is when your pH is elevated. These conditions are basically too much good bacteria, and the treatments are either baking soda sitz baths or suppositories to raise your pH (killing off the overabundance of lactobacillus bacteria). Some articles reference using it in a douche, but I think that's just asking for more issues.

Some doctors don't believe in this condition, but there are MANY articles published about it. Also, one of the OBGYNs I saw said she didn't care if the medical community didn't believe it or not because she saw it under the microscope many times and relieved patient's suffering by treating it. This was not my issue though, even though she had initially suspected it (my pain is worse during my periods). So I can't comment on the treatment's effectiveness.

If you can't find a doctor who is willing or able to check for this, just be careful before self treating because if that's not your issue, killing off good bacteria will only make most issues far worse.

I hope you find relief!

emalita

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