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» I don't know what to do anymore
Yesterday at 5:05 am by SinclairSassy

» Social Security Disability Benefits
Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 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

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

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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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


Acupuncture gave me my life back!

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Acupuncture gave me my life back!

Post  earthbalance on Sun Jul 21, 2013 9:25 pm

Hello everyone!

I was diagnosed with vulvodynia in January, after 5 visits to various doctors, gynos, and even a urologist. The pain set in during the second week of December, and was DEBILITATING. I was unable to do almost anything- work out, WORK, go to class, and I was entirely unable to have sex with my boyfriend. I felt like everything I loved (I was training to compete as a powerlifter so losing the gym was a devastating blow) and my basic human functions (sex with the person I love) were being taken from me and I was, of course, miserable. During my last gyno exam I asked when I would be able to have sex again and my gynecologist said, "I can't even get a finger in you, do you think you can even HAVE sex?" Of course I didn't mean as I was, I was just hoping for a sunny vaginal forecast for the future. But my future (from her perspective) was grim.

I received my diagnosis (the end of the world aka vulodvynia) and information about applying for disability (because my pain was so intense) and was told "This pain won't be the rest of your life, but it will be your life for the next little while--maybe a year or so. Your life isn't over, it will just be different. Is your partner understanding? You may not be able to have sex again soon, or maybe at all. But there are other ways to be intimate. You should get health insurance because you'll need to go frequently to a gynecologist and try different methods of pain management until you find one that works for you. Hopefully it won't be a long process."

I left feeling total helpless, my life snatched away by endless burning and pain. I'm 30 years old, fit, and prior to this vulvodynia, was healthy and happy! I was visiting my Dad when I received my diagnosis and he asked if I would be willing to try acupuncture. I told him I was willing to have my leg cut off to make the pain stop, so he made an appointment.

I will preface this by saying that my results (time-wise) are not typical, but the outcome (being pain free after acupuncture treatments) IS.

My vulvodynia has two kind of pains: an external burning that feels like acid had been thrown on me, and an internal pain that feels like open, swollen wounds--almost like the inside of my vagina was used as a scratching post for cats. Both types of pain were constant. I could barely SLEEP. Sit. Walk. Do ANYTHING.

Every day I used to rate my pain to let my boyfriend/parents (who were very worried about me) know how I felt. I went into my first acupuncture appointment at a 7. I explained this to my acupuncturist, and at some point during the treatment, she asked me to rate my external burning pain. I instantly started to say 7... but then I realized I barely felt ANY pain. I rated it at 2, and she was delighted and got to work on my internal pain.

Unfortunately, the internal pain stayed throughout my treatment, but I was SO HAPPY to be rid (even temporarily) of the burning that I considered the session a huge success.

Over the next couple of days my pain (burning AND internal!) diminished more and more, much to my disbelief and delight! 3 days later I came home. That night as my boyfriend and I laid in bed, I told him all about my treatment, how I felt my pain start to prickle and then... just evaporate off of me, and one thing lead to another and WE HAD SEX... WITHOUT PAIN! It felt great! We hadn't had sex in two months, and I was so happy and relieved and overwhelmed that I cried. I had thought that part of my life was gone forever. I felt like a human again.

A few days later, my pain came back. But long story short: I found a local community acupuncture clinic where I live. For the next 2 months I went twice a week ($35 a week), and each session would keep me pain free until the next. I was able to have sex, work out, use tampons, and be more or less normal.

Now I go only every week and a half, sometimes less. I still get pain when I'm stressed out, but it goes away within a day or two.

If you've made it through this story and relate, pleeeeease give acupuncture a try. Don't expect a miracle at the first session, but, I was told, generally within 7 sessions there should be change. Before you pump yourself full of drugs or do anything drastic, see what acupuncture can do for you! You don't have to believe in it for it work, just like anything else. (Just like you can disbelieve that 5 cups of coffee won't wake you up but if you drink them your belief won't stop you from bouncing off the walls!)

Acupuncture gave me my life back, and I hope if can give you yours! Very Happy

earthbalance

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Re: Acupuncture gave me my life back!

Post  Finch on Sun Jul 28, 2013 1:52 pm

Thanks for sharing - this is a great success story. I'm so pleased you found something that works Smile
I have often wondered about acupuncture, as many people with vulvodynia have certain trigger points that can be linked to other parts of the body.
What was it like? Did it hurt or feel odd?

Finch

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Re: Acupuncture gave me my life back!

Post  Sebby (Admin) on Sun Aug 18, 2013 10:51 am

Thank you for this, I'm definitely thinking of trying acupuncture. Is it better to try and find someone with some understanding and experience with vulva pain?
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Re: Acupuncture gave me my life back!

Post  tinkerbelle2 on Tue Nov 19, 2013 1:31 pm

Hi, earthbalance!

Acupuncture is something I've been considering. My gp has mentioned it a couple of times. Not sure if you still post on here but has the pain still stayed away? ! Glad for you.
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Re: Acupuncture gave me my life back!

Post  Alana3 on Tue Nov 19, 2013 1:55 pm

I tried it it works but the pain comes back unless you do it consistently at least for me but it relaxes you like no other give it a go cant hurt

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Re: Acupuncture gave me my life back!

Post  mary jane on Tue Nov 19, 2013 6:03 pm

interesting- I'll list it down
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Re: Acupuncture gave me my life back!

Post  young.sufferer on Thu Dec 05, 2013 1:51 am

This may we a silly question, but are you just receiving normal acupuncture or are you getting acupuncture on your actual vagina? Wondering what I should prepare myself for!

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Acupuncture help for V

Post  neesegjohnson on Thu Dec 08, 2016 3:41 pm

So, I have had 4 acupuncture treatments. Before I went I specifically told her I had vulvodynia so she would focus on the V area. After the 1st visit it felt better for a couple of days then returned. After each time, it has increasingly gotten better. I have had a one day flare up in the last 2 weeks and I believe it's a combination of things but definitely believe acupuncture helps cure vulvodynia. My girl said she has helped other women with V as well. I am now going every other week and as needed. I have had vulvodynia for 5-6 months. My plan is to gradually go down to once a month at some point. She puts only a few needles in, they do not hurt. She puts one on each side of the vagina close to that area but def. not in the vagina. Try it. I have done a lot of research on the problem and acupuncture stimulates your bodies natural healing abilities. Btw..I have pretty much tried everything!

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Re: Acupuncture gave me my life back!

Post  Bx11 on Thu Feb 22, 2018 11:25 pm

Can anyone tell me where they have the needles placed as just starting to explore this option with my Physio

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Re: Acupuncture gave me my life back!

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