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» New here would very much appreciate advice at the end of my rope
Fri Jan 11, 2019 1:46 am by Jma990o

» Diagnosed Recently
Tue Jan 08, 2019 3:55 pm by flissyg

» Looking for suggestions or encouragement
Thu Jan 03, 2019 11:09 am by Gaby

» Clinical Trial for Vulvodynia Treatment
Wed Dec 19, 2018 7:13 pm by wramirez

» New and need advice and help
Thu Dec 13, 2018 9:48 am by Derry59

» Things that have worked for me
Tue Dec 11, 2018 11:32 am by Amethyst

» Found relief after more than 15 years of pain!
Tue Dec 11, 2018 11:17 am by Amethyst

» I'm new to this forum and would love some advice! :)
Tue Dec 11, 2018 3:06 am by Cin124

» I think I know what causes vulvodynia-it's the memory of pain
Sat Dec 08, 2018 1:24 pm by foxysugarpants

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: 2

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: 0

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 6

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: 4

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: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

Comments: 0

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4


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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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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