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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 …

Comments: 1

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: 8

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.

Comments: 1

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

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 …

Comments: 0

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


My 6 year story

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My 6 year story

Post  ringostarr26 on Tue Jul 31, 2012 6:18 pm

Hi Ladies,

I am new to this forum and I figured this would be a great place for my first post. I am 22 years old and have had vulvodynia for approximately 6 years. It has definitely been a struggle with many up ands far too many downs, but I'm still fighting everyday. My story began much like many of yours. A nasty yeast infection and UTI that never seemed to go away. I wasn't sexually active at the time so STI's did not play a role. I saw countless doctors who all dismissed my pain and even had a family doctor tell me she would no longer accept me as her patient. As a woman who had female doctor I was repulsed by how quickly she dismissed my concerns and referred me to a councillor because she thought it was all in my head. Crazy right? We have all been there and I want you all to know that although I have been in a nasty flare recently, I am beginning to feel a lot better. Elavil was no help to me, though it was the first choice of treatment from my Gyn. The first year of pain was probably the worst, because like all of you, i tried osteopaths, was on way too much diflucan and flagy, and was in a relationship with a guy who was extremely hormonal like most teens are. Sex with his was coexistent, not because I didn't want it, but because it was too freakin PAINFUL! Here is where my story changes. After developing TMJ after a wisdom teeth surgery gone wrong, I was referred to a pain specialist who was very knowledgeable about pelvic pain as well. He connected my pelvic pain to a nasty fall I had while cheerleading in high school and discussed the possibility of a tail bone injury as well as pelvic floor weakness. Unlike many other doctors, HE CARED. I can't pinpoint exactly what got me to a point of remission but i can tell you all that it lasted 4 years! 4 years of no pain! My most recent flare seemed to have been set off by the same yeast and UTI combo and I have been feeling it for about 2 months. Back to my pain specialist, who believes that my muscles are so tight they are compressing my pelvic nerves. I am now getting treated with compounded vaginal suppositories which contain valium, lidocaine and one other anti-spozmadic? sorry my spelling is terrible. I have the most supportive boyfriend, and my family is right there by my side. I think the meds may be helping but it is too early in the treatment to tell.


IM SO SO SORRY for the long post but i needed to vent and I finally had the guts to join this forum and tell my story. I believe we can all get better, we just need to find a doctor who won't give up; much like my pain specialist. Here is to a pain free future for us all!

ringostarr26

Posts : 58
Join date : 2012-07-31

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Tail bone

Post  Rainy Day on Tue Jul 31, 2012 6:47 pm

I also have a tailbone injury---broken in 2 spots. I am wondering if I should see a pelvic floor therapy person or a pain specialist for this. It's interesting that this sort of thign can cause all of these issues. Mine also started with a UTI and yeast infection...but I was having some tail bone issues before that somewhat...and then I actually 'broke' my tailbone a month after my problems started...

Rainy Day

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Location : US

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Re: My 6 year story

Post  ringostarr26 on Tue Jul 31, 2012 7:22 pm

My pain specialist said he sees many women and surprisingly men who are snowboarders, bicyclists etc that have these sorts of injuries, which inevitably lead to weak pelvic floor muscles. He believes I was pain free for so many years because I hadn't had any subsequent infections. UTI's and Yeast can cause the muscles to tense up and cause pain that mimics other conditions. I am looking into started PT after my treatment with the suppositories hopefully helps release the muscles. I feel like as much a GYN's can help with the exterior pain issues that they CAN see... a specialist who knows about pelvic floor muscles may be more helpful in diagnosing what could be the root of our pelvic pain. Definitely see if you can get an internal vaginal and rectal exam.... you will be surprised as to how much more painful it is when a doctor knows which muscles are is spasm.

ringostarr26

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Re: My 6 year story

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