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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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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 …

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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 …

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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

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


Do we belong?

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Do we belong?

Post  Cait on Sat Sep 17, 2011 10:47 pm

Hello, I'm a transgender woman and I'm asking on behalf of trans women with vulvodynia whether or not we belong in a forum such as this. Obviously we wouldn't want to intrude if we're not welcome - i.e. if our pain is less 'legitimate' because we were not born with vulvas and we had surgery to create them.

~Cait.

Cait

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Re: Do we belong?

Post  Mette on Sun Sep 18, 2011 10:25 am

Hi Cait

I'm new to this forum as well, so I don't know what the general consensus is, but in my opinion pain is pain.
To me the worst thing about this disease is that it makes it difficult to have a normal sex-life, which makes it difficult to have normal love life. From looking around on this forum it seems that a lot of women feel that way. I can't imagine what that must be like for you. Trying to establish an intimate relationship with someone with all the prejudice and stereotypes on top of all the problems the rest of us are experiencing. I can only imagine the frustration you must feel, when you finally get the body that you want (I imagine that it is a very long and difficult process) and then you a still not able to live the life you long for because of this horrible condition.
I think we can all relate to the frustration that comes with the tabu of this pain condition. And just because you had your vulva created it doesn't mean that it is less real.

Did your pain come as a result of the surgery or did it emerge afterwards?
What kind of treatment are you trying to relief the pain?

best, Mette

Mette

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Re: Do we belong?

Post  Sarah001 on Sun Sep 18, 2011 7:51 pm

Hi Cait, my first thought was would anything we discuss here be relevant to you then I realised of course it would, some ladies here have pain provoked by surgery and therefore possibly nerve damage or scar tissue etc. Then there's the pelvic floor, surgery in the genital region could quite easily set off pelvic floor dysfunction in women born with vulvas and women who weren't. Then of course hormones, or spinal issues or hip problems etc etc so I don't see any reason why this forum wouldn't be a suitable place for you ladies. I'm sure the majority of women on here will agree with me and Sebby is our founder and leader but a bit under the weather right now or I'm certain she'd be welcoming you the same as she does everyone. So welcome to the forum and feel free to discuss anything with us.
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Re: Do we belong?

Post  Cait on Mon Sep 19, 2011 6:59 am

Thank you for your replies; I understand that my question was probably a little awkward and unexpected.
A little history wouldn't go amiss:
I had GRS (Genital Reconstructive Surgery) in November last year, to create a functioning vagina and vulva. I had problems after surgery with clitoral sensitivity, which meant that I couldn't walk without a lot of pain, even though everything appeared to be well healed. I also had pressure pain on the bottom of my outer labia which made having penetrative sex really sore and made wearing certain kinds of underwear totally out of the question.
The clitoral situation has vastly improved, though I still get the odd twinge now and again for no apparent reason.
The labial pain, while better, is still there and continues to cause problems during sex, though I can mentally master the pain sometimes. If I wear bikini-styled underwear, it starts to become uncomfortable after a couple of hours.
Then of course there is the regular dilation I have to do to keep my vaginal cavity from closing, which really doesn't bear mentioning, since that's often one big uncomfortable pain-fest.
So that's my story.
I'm hoping that it all just goes away with time. It's been nine months now and I hope it doesn't end up lasting a lifetime.

Cait

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Re: Do we belong?

Post  Sarah001 on Mon Sep 19, 2011 5:28 pm

I can't help but think there's going to be trigger points and restrictions in your pelvic floor, it must have been heavily involved in the surgery and quite possibly reducing blood flow to the area. Have you tried skin rolling the labia? It can help remove stuck fascia, trigger points and help reduce sensitivity to touch, it's always recommended for anyone with scarring in the area so it might help.
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Re: Do we belong?

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