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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 7

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

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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