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» Finally found a place for me...
Today at 4:08 am by mtsp

» UK Vulvodynia Clinics
Yesterday at 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

» There is hope after all!!
Wed May 16, 2018 2:50 am by Cbrimer28

» Getting to the point of wanting to End Everything ADVICE NEEDED
Mon May 14, 2018 6:49 pm by fairlight10

» Looking for advice!
Thu May 10, 2018 8:50 pm by KB365

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


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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