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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 …

Comments: 4

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


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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