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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 …

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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 …

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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 …

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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


3 Years and Counting

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3 Years and Counting

Post  painfulvag on Thu Nov 29, 2012 6:31 pm

I have been to 3 gynecologists and the third one finally gave me hope. It was actually for a clinic trial, which I was ok with as long as it got me some answers and relief! Unfortunately I'm pretty sure I got the placebo and discontinued use. I know, I know. I shouldn't have stopped. But also, the clinic told me they would reach out and check up on me every so often throughout the trial to see how things were progressing, and they never did. So today I decided to get online to do some more research myself since I'm tired of getting my vagina looked at by strangers. I thought maybe, MAYBE I had some kind of chronic yeast infection issue (I thought this because the last time I went in, I was told I had a yeast infection even though I did not have any tell tale signs). So looking into the infection business led me back to the vulvodynia, which I had come across before. That led me to the National Vulvodynia Association (NVA) which I recommend taking a look at their website if you haven't already. That's where I found what I am almost 99% sure I have: Secondary Vulvar Vestibulitis Syndrome. Quite the mouthful, but it describes my situation to a T. Sooooo, that brings me to my question(s): Does anyone have a magical cure that I am unaware of?? (wishful thinking...) How do you deal with not being able to have sex on a regular basis? Has anyone tried using lidocaine for a temporary fix? (i.e. topical or Dermoplast) Any feedback will be much appreciated. Sorry for the novel.

painfulvag

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Re: 3 Years and Counting

Post  Alana3 on Thu Nov 29, 2012 8:21 pm

No magical cure, I am headed in for surgery next week which my doctor claims will make me feel a lot better. I really hope so because this sucks.

Like you I had a normal sex life (I read your other post) started on tricyclin and was put on loestrin when you guessed it I started having pain! I got off of that went on yaz, seasonique, and finally mircette (I have to be on BC for my period). My pain never went away so I doubt you haven't given it enough time, I think it's just there (sorry). But that being said, I don't know if my pain was caused because of birth control or other related things. I had to go to a gyno when I was 3 because of bleeding issues caused by Mr Bubbles. When I was 17 I went on a sulfa drug that caused me to have a horrible yeast infection. I am also very prone to bladder infections and bacteria. Thrill.

I don't have a boyfriend so sex on a regular bassis doesn't really bother me, but when I did, we took it slow and it was sort of pleasurable. I have only use lidocaine for pain (it burns REALLY bad when you first apply it).

The things I have tried that didn't work (but might for you): Estrace, a compound of gabapentin ami(forget the name its an antidepressant) and lidocaine, a compound of estrogen and lidocaine, acyclovir (herpes medicine I do NOT have herpes but they thought it would help with nerve endings it didn't and not even a treatment), muscle relaxers, allergy medicine, various vitamins/oils, and over the counter pain killers.

I used the NVA to find my new gyno, and I really like him, he said I will be feeling better in a few weeks and I have to believe him, I have done everything I can do and there's not a lot more I can take. Where do you live? The NVA is amazing and their website is pretty awesome too as it gives a lot of information that I didn't know or needed reminding of.

The most important thing at least for me was to never give up. Don't get me wrong, I was very upset and depressed about this, but I knew someone somewhere could help me. I was proven to be right when I found my doctor. He was the first person to ever actually see exactly where the problem was. Make sure to educate yourself as best as you can so you don't try useless treatments and waste more time. The acyclovir for me was a big waste as it's not even a treatment for vulvodynia. Antideprssants for some people work well, but I didn't want to deal with the side effects, and my doctor claims they take a while to work because of the adjusted doses. Let me know if you have any questions, hope I helped Smile

Alana3

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Re: 3 Years and Counting

Post  painfulvag on Sat Dec 01, 2012 3:54 pm

I live in Arizona. I was trying to look through the NVA for a dr but I guess you have to donate?? Which is fine, I just didn't take the time to do so. I honestly haven't tried anything to solve the problem, I just kind of figured I would be stuck with it for the rest of my life. Thank goodness I have a wonderful boyfriend who has gotten more supportive over time. We had already been together for 2 years before the pain started. Don't get me wrong, it has definitely not been easy for him either, but after seeing me in so much pain I cry or almost throw up after sex, he got the hint. I don't know if I'm interested in antidepressants either, but I'm getting desperate. I've tried a lidocaine ointment which did nothing, but figured I'd try the Dermoplast spray and see how that went. I love the birth control I'm on so I'm also hesitant to switch, but again, I'm getting desperate. Did this one dr prescribe the other treatments you tried or just the surgery?

painfulvag

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Re: 3 Years and Counting

Post  Alana3 on Mon Dec 03, 2012 2:53 am

No I tried other treatments with him but only one I've been going from doctor to doctor and than I found him and to be honest im sick of the maybes just fix it already. I won't even date what's the point? Sex terrified me and ugh I don't know. I can't even wrap my mind around no pain to begin with lol I didn't donate I just found my doc he's in Florida I really like him. Have you been to a specialist

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Re: 3 Years and Counting

Post  tinkerbelle2 on Sat Oct 19, 2013 4:50 pm

Hi girl, do you still post here? I have also had this for 3 years! Hope you're a bit better babes x
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Re: 3 Years and Counting

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