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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

Want to give up

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Want to give up

Post  Princess-j13 on Thu Jul 11, 2013 4:34 pm

Has anyone had their vagina and everything removed. I can't deal with the pain anymore. I've had it all my life and now it's so bad that I'll randomly start having spasms so bad that it's like I'm in labor. I'm only 22 and idk what else to do after physical therapy, nerve blocks etc has only made me worse. I don't want to give up on relationships but idk how to live with this anymore


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Re: Want to give up

Post  Alana3 on Thu Jul 11, 2013 5:24 pm

I had a vestibulectomy which helped me but my pain was onky localized so I don't know if that would help you


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Re: Want to give up

Post  Princess-j13 on Thu Jul 11, 2013 6:53 pm

I have general vestibulitis and vaginismus, my pain is much worse inside. Thanks tho!


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Re: Want to give up

Post  ringostarr26 on Fri Jul 12, 2013 3:01 am

Hey Princess-j13,

I am only 23 so i know how you are feeling. I have suffered since I was about 17 and at times it can be really hard. I have tried everything too but all I can offer you is hope. I suffer from generalized vulvodynia so there are days when my pain is with me 24/7. That being said, over the years I have learned to cope and deal with the pain. Also, my flares are a lot less frequent. Relationships are extremely hard but believe me there are guys that are completely understanding. I have been with my boyfriend for almost 2 years and he has never complained once. He supports me and will literally sit with me while i cry and eat ice cream because I'm in so much pain lol. Just have hope and try to relax. I have really bad anxiety and my symptoms are 10x worse when I am constantly thinking about it!


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Re: Want to give up

Post  BpCookie on Sun Jul 14, 2013 6:48 pm

To anyone who wants to give up, dont let this thing beat you. Keep fighting and keep trying to find that one Dr. who can help you. There is some one, some thing, that can help you, you just have to find it.

Ive only had mine for over two years and I just wanted to give up. I would just take my pain meds and lay in bed crying, just wanting to die so that the pain would go away. I was in a constant depression. Then I turned that depression into something constructive. I was determind to find relief. I researched my VLSC, started thinking outside the box and went to many Gynos, Pain specialists, vulva specialists, etc. Just recently I had surgery done where The Dr. lasered my vulva and removed my Hymenal tabs. It will take me a few month before I know if it worked or not.

So what Im encouraging you to do is, keep trying everything, keep seeing different Dr.s, do research and in the end you may want to try surgery.

Hang in there everyone.

hugs to all

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Re: Want to give up

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