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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 …

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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 …

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Flares? What are they?

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Flares? What are they?

Post  BpCookie on Thu Apr 04, 2013 4:18 pm

Hi dahlings, I read about women having *flares* all the time but in truth I'm not sure what a flare is. My burning pain is pretty constant, with an a few hours here or there with out any pain and my pain lvls fluctuate but I have only had a hand full of days with out any pain. (except for two glorious months when Lyrica actually worked). So when you talk about flare ups, what does that mean? Do you have days, weeks or months with out pain? Did you always have flares?

Thanks Smile

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Re: Flares? What are they?

Post  ringostarr26 on Thu Apr 04, 2013 7:33 pm

I actually had 3 years pain free!! don't ask me how because i have no idea! But after being diagnosed it took two years to get in under control where i would have weeks without pain and then 3 years pain free. Now I'm in a flare and it's been awful for over a month. what a drag. Sad

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Re: Flares? What are they?

Post  sassy26 on Thu Apr 04, 2013 11:01 pm

I was first diagnosed with vulvodynia in my teens and dealt with it for about two years. It went away all by itself for the next 2 1/2 years. I was able to have pain free sex and felt like my normal self again. Just this past week ive been feeling that familiar burn and it scares me to think that it could come back again. I hope this is just a flare and that I will still be ok.

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Re: Flares? What are they?

Post  Sarah001 on Fri Apr 05, 2013 12:55 pm

I think it means different things to different women, I know some women on here have minimal pain daily and a flare is when that increases so they feel it all the time, for me it's when either my pelvis misaligns badly and increases my constant pain to a shocking level or when clothing irritates me and drastically increases pain so it's as variable as our symptoms. Didn't you say once you had a tight pelvic floor bpcookie? I seem to recall a conversation about it a while ago but I may have mixed you up with someone else!
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Re: Flares? What are they?

Post  BpCookie on Fri Apr 05, 2013 3:16 pm

Sarah hun, I have a bit of tightening on the upper left side. I went in for pelvic floor therapy one time and then my health ins. company refused to pay, so I never went back. I see women talk all the time about having back problems also, just like you had mentioned about your back being out of alignment. I've been meaning to see my chiro because my back has been horribly painful lately. I've had chronic back pain for 6 yrs and its only getting worse. My PS told me not to see my chiro just yet because I have been having different procedures done by my PS and if I do have pain relief, they want to make sure it was the procedure and not the chiro. *shrug*.

What you are saying about flares make sense. I don't have flares, not yet at least.

Ya know, since women speak of flares, I'm wondering if the vulva pain is connected to a Autoimmune Disorder. Like perhaps our body is attacking our good vulva skin cells? When I was seeing a vulva specialist and my vulva pain was resistant to all of her treatments, she wondered if I had an autoimmune disorder. Just a thought.

Have a good Friday. hugs
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sassy and ringostarr

Post  BpCookie on Fri Apr 05, 2013 3:20 pm

Hey girls, I'm so sorry about your flare. It must be so disheartening to go so long with out pain and all of a sudden *bam* the pain hits again.

Big hugs to you both
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Re: Flares? What are they?

Post  Sarah001 on Fri Apr 05, 2013 5:31 pm

Do you know what bpcookie, I think once your nerve procedures calm down if they don't work you should definitely go back to the chiro and get your alignment sorted out plus you could always buy Heal Pelvic Pain by Amy Stein which tells you how to treat your own pelvic floor so it might work out combining the two if your insurance won't cover the pelvic floor part. Obviously your nerve procedures might help and this might not be necessary and I'm crossing my fingers for you!
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Re: Flares? What are they?

Post  BpCookie on Fri Apr 05, 2013 10:22 pm

Thank you Sarah Sweetie!!!! My entire back is screwed up. I have arthritis in my neck and also a thinning disc, I have scoliosis in my back, I injured my tail bone when I was a teen, something is wrong with my hip and leg and on top of that I have a burning bush, LOL. Im a freakin mess. I most def. need to see my chiro. and soon. He is fabulous and I could really use one of those hard core back massages (actually its more like back torture massages) but I still love em.

Anyways, take care dahling. hugs
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Re: Flares? What are they?

Post  Alana3 on Fri Apr 05, 2013 10:29 pm

Have you tried acupuncture? So worth it

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Re: Flares? What are they?

Post  BpCookie on Fri Apr 05, 2013 10:56 pm

Alana hun, no I haven't tried acupuncture for the vagina thing just the back pain, but it didn't work for the back pain. So have you done it for the vagina pain? If so, how do they do it?
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Re: Flares? What are they?

Post  Alana3 on Sat Apr 06, 2013 4:05 am

For hip back shoulder and vag. Didn't Work for vag (well the vaginismus it did) but no vulvodynia.it helps me more now but it works wonders I couldn't even turn my neck the other day and now I can Smile idk my lady researched everything tho not to say your person didn't but I throw so many things at her and she def helps me if not im very relaxed at least lol

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Re: Flares? What are they?

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