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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 …

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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 …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


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 7-month quest so far...

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My 7-month quest so far...

Post  Julie on Wed Jul 28, 2010 11:18 pm

I never thought I would be so emotionally drained and distraught as a result of a gynecological issue!

In December of 2009, I started having some uncomfortable itching and pain, and I visited a gynecologist who performed some cultures and diagnosed me with bacterial vaginosis (BV). I was prescribed a gel insert which didn't fully work, so I was then given a pill, which cleared up all of the symptoms -- except a bit of the pain. I found that over the next few weeks, sex with my boyfriend (whom I have been dating now for over 2 years... quite an understanding guy, thank goodness) was becoming more and more uncomfortable. I became more irritated (physically AND mentally!) as time wore on, and in March, I saw another gynecologist. He first suggested I try an over-the-counter hydrocortisone cream -- which, predictably, failed -- and then gave me a prescription form (i.e. slightly stronger), which still did nothing. My cultures and tests all came back normal -- no infections, no STDs, normal pap smear -- so his last move was to perform a biopsy on the vulvar skin to check for any unlikely (but scary) possibilities.

Of course, the biopsy came back all clear, and I was told to try the hydrocortisone cream once again.

At this point, I was not able to have any sex at all, and even after the biopsied spot healed, my overall irritation was so severe that I finally had to stop using tampons. The bits of time before, during, and after my period seriously exacerbated the situation, and my frustration grew. I saw one more doctor in June, who prescribed me the strongest steroidal cream he could think of -- to no avail.

At this point, my emotions were shot. I had become so discouraged and resigned myself to a sexless, uncomfortable life. I hated thinking such dramatic things, but I seriously (albeit VERY briefly) considered the pros of having a hysterectomy (no more periods, no more hormonal surges, etc.), but I wanted to have children first, so I thought...hey, IVF!... I could have a child via C-section and then get my tubes tied, and at least remove some of the issue. Obviously a ridiculous notion, but the frustration ran that deep.

I also began to experience an attack on my sense of womanhood that I never fathomed before. I am not particularly into feminism and I don't often think very deeply about gender norms, but here I was, rendered unable to be intimate with my boyfriend, unable to be comfortable during my period, and in pain while I exercised, used toilet paper, wore tight clothing/thongs, and sometimes when I just WALKED... I felt hopeless. I felt incomplete.

A lot of research led me to the term "vulvodynia" -- chronic vulvar pain -- and FINALLY, the last gynecologist I had seen mentioned the word to me as he referred me to another doctor in his practice, a woman who has been researching the condition. Merely hearing him speak that magic word lifted my spirits!

I visited this new doctor a week ago. She changed my entire regimen -- new detergent, new soap, different pads...everything to cut down on excess irritation. I asked to be put on Seasonique, a birth control on which you only get your periods every 3 months (I never felt comfortable doing this before, but once my periods became living embodiments of hell, I didn't think twice!). She also did some cultures and found that there was some sort of yeast present, so I was put on Diflucan, 6 pills, once a week.

I am still just as discouraged as I was before... my libido has hit rock-bottom and I feel that I cannot become as close to my boyfriend as I did before (although this is most DEFINITELY a testament to our bond, as a lesser person would not have wanted to put up with a dearth of sex... and I know from experience); my moods align almost perfectly with the degree of pain I am in, to the point where I just want to curl up and do nothing, see no one; and I am seriously doubting the existence of any sort of solution -- and, by extrapolation, my future as a woman/girlfriend/wife/normal human -- but at least I am getting somewhere.

I am about to pursue a master's degree in public health, starting next month, and my goal after that is to get a PhD in psychology. At this point, I've had some very interesting conversations with my boyfriend about dissertation ideas, and we converged on this working title from which to start -- "Sexual Dysfunctions and the Psychology of Femininity."

I hope to speak with people who have gone through similar issues, and to make a difference in the field regardless of my success or lack thereof. I have to remain hopeful!



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Post  Julie on Thu Jul 29, 2010 2:22 pm

No matter how positive I try to be, it falls back on me and leaves me so depressed. bleh!


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Re: My 7-month quest so far...

Post  naomi on Thu Jul 29, 2010 4:00 pm

I can totally relate to you hun, seems like it came out of my mouth and head! Like many of us ladies on here Sad Its such a struggle everyday to even get out of bed, let alone try and lead a happy and fulfilling life etc etc etc

All I know is, there might not be any quick, simple answers out there but I know there is support and friendship. I dont know what I would have done if I hadnt found a site like this. It is the isolation that gets me, none of my friends or family have ever experienced anything along these lines or to this degree. I wake up some days thinking "whats the point?"...and that scares me as I have never been that type of person to be so negative and pessimistic. But I havent been given any hope, so i have nothing to go by.

We've got to get some answers soon. I dont believe there hasnt been any advances on research or treatment. WE'LL FRIGGIN GET THERE!!!! (hey that was a bit of positivity there i think!?!)

I'll write some more later Im afraid I'm totally wiped out after crappy tribunal earlier.

Love to you all

Nai xxxxxxx


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Re: My 7-month quest so far...

Post  Julie on Thu Jul 29, 2010 5:45 pm

Thanks for the response =) I hadn't until now tried to reach out for support, and the few friends with whom I've talked really can't get a feel for what's going on, so it is REALLY reassuring. Just made myself get up and go walk a few miles at the gym while reading a science magazine (nerdy, I know!) to get my mind off of things.


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Re: My 7-month quest so far...

Post  Sebby (Admin) on Thu Jul 29, 2010 7:53 pm

Welcome Julie!

I can totally relate to everything you said. I have been battling with doctors to take me seriously and have used every friggin cream under the sun! I was living on Hydrocortisone cream and canestan at one point.

At present I am due to see a pain clinic on Monday and just hope when I say the word Vulvodynia I dont get a blank stare! Shocked like ive just walked in with a chicken attached to my face lol

I also feel its robbed me of feeling like a 'woman' I felt like I should just run away to a nunnery and be done with it!

Im still trying to fight on so dont give up, keep posting and let us know how u get on.

Im hoping to try and go down the whole physcial therapy - pelvic floor road.

Take care and keep us updated


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Re: My 7-month quest so far...

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