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» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 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

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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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 …

Comments: 0

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.

Comments: 0

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


A little Hope for 2012

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A little Hope for 2012

Post  esilv on Mon Jan 02, 2012 4:55 pm

I was diagnosed with Vulvodynia in 2005, right before my 24th birthday. Like most people I had never heard of this condition and investigating it online was a really depressing task. So many women suffer and are in pain constantly, and it seemed pretty hopeless. I never joined a forum in the past but I joined one today to tell my story to show that there are happy endings for some of these sufferers.

In 2005, I had just started dating a new guy, and things were better than ever in the bedroom. In the past I had suffered from frequent UTIs and occasional yeast infections, and when our intercourse started being painful, I thought I had another yeast infection. Tried a few days of over the counter treatment, ended up going to my gynecologist because OTC meds for that stuff rarely helped me. My doctor succinctly told me that there was no infection or any other sign of pain, and that she thought I had something called Vulvodynia. It was a condition that had no real known cause or solution. At that point, my pain was mainly during sex but it was severe. For those first few months I couldn't use tampons, and while I did continue to have less frequent sex with my boyfriend, for the first few weeks I was crying most every time, not from pain, but from knowing that this was my future. I was upset because at 24 sex was pretty important to me and to my idea of what a relationship should consist of, and after dating for 4 short months, I couldn't see any reason why the man I was with would want to stick around and deal with such hassle. Sure, I'm great, but there were so many other girls out there who wouldn't start bawling every time things got romantic.

At any rate, I tried a lot of solutions, including elavil, physical therapy, vitamin e oil, good old fashioned ice, acupuncture and even found some relief in a triple x gag gift called 'me so horny' cream that was supposed to turn women on (ya, right) but was essentially icy hot for your lady parts. Most things didn't work. My first run of physical therapy actually did seem to be doing a lot of good, things got much less painful, but then for insurance/cost reasons I had to stop. I would say the first year of my V, there was a lot of up and down as far as pain went, sometimes it was bad, sometimes it was good...definitely felt like a lot of movement. No matter how bad it was, I know I was lucky. It was only during sex, not throughout my normal life, and it was never so bad that I couldn't also enjoy parts of sex, with my patient and still standing by partner. True, there was no more 2nd or third round...I could barely make it through the first round, but I know many women suffered much more. Ice and the icy hot cream helped with soreness afterwards. elavil, vitamin e and acupuncture didn't work for me.

My doctor would recommend other temporary solutions like lidocaine and she had told me that it often goes away just as mysteriously as it appears. I think the first visit, when I was diagnosed, she said "It will probably go away in about 2 or 3 years" which seemed like forever at the time. By 2010, I had stopped trying to find a solution and had just submitted to living my life with V, sex once a week maybe, always a slow and delicate procedure, always with about the same amount of pain (which had leveled off after the first year). My boyfriend and stuck with me for almost 5 years and though I still looked back at our first few months together as the best because they were so easy going and carefree, we had been living a great life otherwise, and decided to marry. Even after 5 years with vulvodynia, it was still a real bummer to have the best wedding day ever and then party til late in the night only to go back to our hotel and try to 'consummate' and in the end, have a pretty unsuccessful time since I was in a lot of pain. Around that time, since I was turning 29, I realized I'd dealt with this for 5 full years and hadn't done much about it in the last 2-3 years so I renewed my efforts with physical therapy and acupuncture.

My doctor told me, quite discouragingly 'Don't bother with those things, it will just go away as it came, usually in 5 to 7 years.' At this point I seemed to remember her telling me 2-3 originally, and I was already at 5, and I simply didn't believe that my life was going to just turn around. I felt like, better to do something that nothing. So I continued for a while and....nothing. This story has gotten really long, so I'll fast forward one year, to about a month before my 30th birthday when suddenly, sex didn't seem like it was as painful...and I could go for longer without having to stop. And I wasn't positive, maybe it was just a fluke, but it seemed to happen again and maybe again. Wait a second, I know we just finished, but can we do it again? Somehow, I don't need to go sit with an icepak over my crotch. It took me about a month to fully accept that things were different, but they were. And so it was. my vulvodynia just sort of...went away.

It's incredible. I don't know how I lived with it for 6 years, but I feel like a new person and I know I never even had it thaaaaat bad. I am sorry to all the women who have to deal with this, especially since it's mostly in silence. I told my mom and sisters and best friends and obviously my boyfriend/now husband, but I really hated having such a painful experience and not being able to properly complain about it. And when it went away I wanted to shout it all up and down Facebook, but obviously, can't do that. I'm not even here to share my excitement; I'm here because I remember being 24 and seeing the most depressing stories ever and thinking there was no hope. Maybe there is for you, just like me! My doctor who was also very excited said that it's unlikely to return for a long period of time...maybe here and there when I'm stress out but for the most part I should be good. I guess she was right before so I'll choose to think positively about the future, but either way I am enjoying the time that I have, and making up for what me and the hubby missed out on in my 20's. Best of luck to all of you, too!


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Re: A little Hope for 2012

Post  ButterflyLiz on Mon Jan 02, 2012 8:00 pm

Hi, thank you so much for sharing your story! I'm so happy for you that your v mysteriously disappeared, that's amazing Smile Though obviously it's still rubbish that you had to go through those 6 years of painful sex. Do you have any theories on what might have changed to make your pain go away? Might it have been your renewed attempts with physical therapy? Anyway, long may it continue for you x
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Re: A little Hope for 2012

Post  Sarah001 on Fri Jan 06, 2012 1:36 pm

That's very good news but like Liz I'd be interested to know if the renewed PT effort might have done the trick? I think you may have posted and gone but if you do come back we'd love to hear more detail!
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Re: A little Hope for 2012

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