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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, …

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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


Hormones and Regular Periods

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Hormones and Regular Periods

Post  lisa98 on Sun Apr 24, 2011 2:25 am

My period is 6 weeks late. Ive had a pregnancy test (might have transferred things during outercourse) which was negative and Im waiting for some blood test results. I usually have a very regular period, but i thought id ask you ladies how regular your cycles are- as a kind of test of how 'normal' all our hormone levels are. Has anyone had their levels of testosterone and other sex hormones tested? I haven't done any research into the influence of hormones on this condition so I dont really know what Im talking about. I did read that female hormones affect joint pain because around ovulation they make the ligaments holding the pelvis and other bones together relax, which comes in handy for childbirth but can exacerbate conditions based on hypermobility or wonkyness of joints. Why do our bodies have to be so damned complicated? Anyway, fingers crossed god isnt playing cruel jokes on me and giving me forced celibacy for 5 years as well as an accidental pregnancy.

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Re: Hormones and Regular Periods

Post  Sarah001 on Sun Apr 24, 2011 12:51 pm

I wanted my hormones tested but the doctor refused, my periods have got alot closer together in the last 2 years but as my Mum was fully menopausal at 45 and I'm almost 38 now I suspect it's my hormones starting to decrease because of that. It's right before and during a period when the ligaments get looser, mine are loose all the time anyway but at that time my pelvic joints are alot worse and more prone to dislocation than at other times. Do you have hypermobile joints normally?
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Re: Hormones and Regular Periods

Post  itchyandscratchy on Mon Apr 25, 2011 9:57 pm

I feel like hormones might have some effect on my condition also, I notice the cyclic patterns, but my doctor seems skeptical. Think I'll ask again if I can get my hormone levels tested, I'd just like to be able to rule it out if nothing else. You'd think doctors would be willing to check up on and test everything when they don't know the cause of a condition, but too often they're resistant to ideas they didn't come up with.
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Re: Hormones and Regular Periods

Post  Zazu on Tue Apr 26, 2011 2:50 pm

In the book 'When Sex Hurts' by Dr. Goldstein(s) and a psychologist whose name I forget, he says there are three underlying causes of provoked vestibulodynia (VVS). The first is nerve-related, the second is pelvic-floor related and the third is hormonally related. The science behind the last one is pretty interesting. Apparently, when we are all tiny embryos, our vestibules develop from different tissue than the vaginal tissue (I think it's related to the urinary tract system). This different tissue actually relies on testosterone to remain healthy. If you have low levels of testosterone, it can throw the tissue into crisis. One major cause of this is the birth control pill which binds to active testosterone in the blood and deactivates it. Apparently those of us who started on the pill from a young age (I was 15) have an astronomically higher chance of developing VVS (something like 900 x more likely). I'm writing this from memory so don't quote me on it but that's the gist. The Dr. has had a lot of success with hormone modulating creams which increase testosterone in the vestibule but also supply estrogen in the surrounding vaginal tissue. Anyway it seems pretty conclusive that hormones affect V.

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Re: Hormones and Regular Periods

Post  Sarah001 on Tue Apr 26, 2011 7:01 pm

It's infuriating isn't it? I've seen quite a few posts from women who improved using testosterone and oestrogen cream mixed but they are all from the U.S and not a single one from the U.K. My doctor was very, very reluctant to give me even oestrogen cream and ended up giving me pessaries instead which didn't work. I know for a fact she'd never consider giving me testosterone cream! I also started on the pill at 15 but haven't been on it for about 6 years now. I've also seen alot of women who took Yasmin with V and VVS and that was the last pill I was on too.
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Re: Hormones and Regular Periods

Post  Zazu on Wed Apr 27, 2011 4:08 pm

Wow, I was on Yasmin too!!

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Re: Hormones and Regular Periods

Post  itchyandscratchy on Wed Apr 27, 2011 5:40 pm

Did a quick search for "low tesosterone in women" - this is the first result http://www.buzzle.com/articles/symptoms-of-low-testosterone-in-women.html

Pretty interesting, dryness and pain during sex are apparently symptoms of low tesosterone in women, but it sounds like the research is pretty cutting edge.

That book sounds really interesting Zazu, think I'll look into getting a copy.
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Re: Hormones and Regular Periods

Post  Sarah001 on Wed Apr 27, 2011 11:37 pm

My copy of that book is winging its way to me right now from Amazon! Another to add to the collection. Andrew Goldstein wrote the foreword in Amy Stein's Heal Pelvic Pain, I posted a link to it somewhere on here, can't remember where but if you find the link you can read what he thinks about treating V with physiotherapy. Or read it in Amy Stein's book of course if you have it!
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Re: Hormones and Regular Periods

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