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» Lichen Sclerosus
Yesterday at 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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Stop taking your birth control!

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Stop taking your birth control!

Post  anon99 on Mon Nov 11, 2013 3:21 am

I am 22 years old and had been suffering with vulvodynia for over a year. I had been on birth control since 16 years old and had no issues with it...or so I thought. After a year of pain and discomfort (constant burning, stinging, fissures) and after countless trips to 7+ doctors and specialists, I myself found the cure to my own vulvodynia. I decided I was going to go as "natural" as positive in hopes to making myself more healthy. Therefore, I stopped taking all medicine, but Loestrin 24 was the only medicine I had been taking daily. In a month's time, my pain has finally gone away. I consider myself very blessed and am so thankful to have cured my vulvodynia. Doctors were telling me that it was something I was just going to have to live with but I just couldn't accept that answer so I kept searching for a cure. I think it takes a few weeks for the hormone levels to reduce and for your vaginal area to reduce in irritation and inflammation, so be patient, give it a month's time, and let your body heal. I will never go back on hormonal birth control ever again. The year with vulvodynia greatly affected the person I am, both emotionally and physically. I will pray for everyone reading this that they will find their cure.

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Re: Stop taking your birth control!

Post  anon99 on Mon Nov 11, 2013 3:22 am

Also, I would like say I have been pain free for 4 months now

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Re: Stop taking your birth control!

Post  Neevi on Mon Nov 11, 2013 9:31 am

I have a gynaecologist appointment for weds morning to get overall diagnoses but i have thought about coming off the pill to see if that helps at all.
Happy to hear it worked for you, helps me keep positive about curing it!
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Re: Stop taking your birth control!

Post  Alana3 on Mon Nov 11, 2013 10:54 am

Please dont tell people to stop taking meds. I absolutely have to be on bcps for endo and it didnt cause my pain. Remember everyone is different but until you go to med school you shouldn't be giving that advice. I'm glad you're pain free but that would cause a whole different level of hell for me. You're lucky that you had such an easy way of getting cured. Also remember different bcps do different things. I had one that gave me constant yeast infections so I switched. But please keep in mind you have no idea why someone might be on the pill its not always for sex. I have terrible periods and pain. If im not on the pill forget living I'll be in bed for 2 weeks of every month. Vulvodynia doesn't seems terrible then. At least for me. And there are other alternatives too I had surgery and I'm good to go. But like I said I'm happy you're cured but keep in mind sometimes you cant simply go off meds that easily.

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Re: Stop taking your birth control!

Post  anon99 on Mon Nov 11, 2013 12:13 pm

Alana3-
I was on birth control for endo as well. I would rather have 3 weeks free of pain per month than pain everyday. But that's just my opinion. I think you missed the point of my post-- this forum is a place to share your story so that is what I have done. Also it wasn't an easy cure. I cried every day for 14 months because I was miserable and was having no luck with other treatments. I shared my story in hopes to possibly help another woman reading this forum; that they would talk to their doctor about the possibility of birth control being the cause and consider going off of it.

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Re: Stop taking your birth control!

Post  Alana3 on Mon Nov 11, 2013 12:20 pm

I just dont like hearing oh hey I got off bcps and you should too was my point. Like I said glad it worked for.you. and that its way broader than no more hormones. If you have endo how do you deal now? Most girls with endo cant ditch bc and be good, but again if you can great.

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Re: Stop taking your birth control!

Post  anon99 on Mon Nov 11, 2013 12:34 pm

Alana3-
For me, it was as simple as the hormones I was putting in my body were hurting me. I just wanted to share my personal story, find support, and support others. Best of luck to you.

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Re: Stop taking your birth control!

Post  Alana3 on Mon Nov 11, 2013 1:01 pm

Ok but that doesnt answer how you're managing your endo now. Did you get surgery? Im all for getting off the pill esp if theres a way to manage endo.

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Re: Stop taking your birth control!

Post  mary jane on Mon Nov 11, 2013 4:21 pm

it makes sense they don't work for everyone, I was on yasmin for only 3 mo. last year and one day I just woke up with sowllen vestibular glands!!!! My vulva was swollen as well, the glands l=felt like bulging veins, luckily then they dissapeared after taking naproxen !
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Re: Stop taking your birth control!

Post  Alana3 on Mon Nov 11, 2013 4:38 pm

And you're sure that's from bcps? Naproxen is an anti inflamatory so that makes sense it would go away. Also remember that different pills work for different people so the one that works for me may not be right for you. And vice versa. I'm just not a fan of hearing oh get off your pill and you'll feel better because it's not true for everyone. That was my point. Nothing more.

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Re: Stop taking your birth control!

Post  mary jane on Mon Nov 11, 2013 5:01 pm

yes, I'm sure it was from the birth control. It was my first time ever taking them and I did not do anything else to cause such bizarre symptoms.
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Re: Stop taking your birth control!

Post  mary jane on Mon Nov 11, 2013 5:02 pm

I was on them for 3 months only. I was fine after I stopped taking them
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Re: Stop taking your birth control!

Post  Alana3 on Mon Nov 11, 2013 5:16 pm

Yeah any medicine can cause weird stuff thats why theres so many I'm allergic to tylenol thats why I take advil

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Re: Stop taking your birth control!

Post  Fingerscrossed on Tue Nov 12, 2013 10:31 pm

I've been on birth control (in various forms) since I was 18 and I'm about to turn 24. I asked my doctor, a pelvic pain specialist in Louisville, KY, about stopping birth control and he disagrees with the idea of stopping. In his mind, the pills help you to not have pain because they control your cycle. I'm actually on continuous birth control now and don't think it's made things worse. I have been scheduled for a vestibulectomy on Dec 17. If that doesn't work, I'll probably try getting off all my pills. I think my nerves are the issue, though I cannot compare sex on pills vs. off them. I've been on birth control for as long as I've been sexually active.

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Re: Stop taking your birth control!

Post  Alana3 on Tue Nov 12, 2013 10:56 pm

I lived in lex for four years if its nerves the vestibulectomy will help

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Re: Stop taking your birth control!

Post  A2015 on Wed Jun 03, 2015 8:52 am

@anon99, your experience is almost identical to what I experienced in 2012.
Was on the Pill (Microgynon), suffered for over a year with Vestibulitis, countless trips to doctors none of whom suggested coming off the Pill. In desperation, I did, and within a month, all my symptoms had gone away completely.

However, in 2015 (having not been on hormonal birth control since, as I also swore I would never go on it ever again), I got a Yeast & BV infection and it has triggered Vestibulitis just as it was before.

I just wanted to comment to advise being gentle with your body, as I thought I would never have any problems again (I was so completely cured) and thought I was resilient to infections/VVS returning. I never had to question why coming off the Pill worked, as I assumed it was hormonal, but this time, it doesn't appear to be. Be well.

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Re: Stop taking your birth control!

Post  sailor_moon on Fri Jun 05, 2015 1:15 am

All my problems started when I came OFF birth control...and when I went back on it to see if it would fix me it didn't. I think the pill has screwed up my hormones to the extreme that 2 years later I still only get a period once every 3 months.
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Re: Stop taking your birth control!

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