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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

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering


I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

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New to this forum

Post  fairymoond84 on Sun Jan 13, 2013 12:48 am

Well let me start off by introducing myself, my name is Erica, I am 29 years old and I live in Florida. About 2 years ago all of a sudden it started to burn during intercourse. I thought "Oh great, another yeast infection". Took the yeast infection pill. Didn't help. Started to get worse. So I went to the ER. They told me I had trichomoniasis. Which did not go to well with my husband. Me and my husband have been together for 13 years. Anyways back to what I was saying. I knew I didn't have a STD, there was no way I could. So I went to planned parenthood, I didn't know where else to go because I was waiting for my health insurance to kick in. Well she said it wasn't trich, I thought thank goodness. She said it was my soap. So I stopped using soap down there. Still burning!!! So a few months later my insurance kicked in. Finally!!! I went to a OBGYN and he said that I had a fungal infection. Gave me the gel to put up there. For a few days no burning. Then by the 4th day, ON FIRE. Like acid was being poured down there. I went back to the same OBGYN office to see the same doc, but he wasn't there. So I had to see a different doc. He did some more tests and then told me that he knew what I had, Vulvodynia. Now here is where my experience with everything gets worse. I asked him what it was. He took a piece of paper and wrote down "Vulvodynia" and told me to google it. Like seriously you couldn't explain it. I was torn. How are you going to diagnose someone and be heartless. Not to mention the whole time he is examining me he is to busy joking with the nurse. And every time I would talk he would interrupt me. Anyways, I haven't been back to any other docs since that experience.

So now 2 years later I have noticed a lot with this Vulvodynia THING. Sex is only possible if I am beyond drunk where I can't feel anything. I noticed that I burn when I have discharge, and that I mostly have brown discharge. Has anyone else noticed that they have more brown discharge since having V? I am also starting to think that it is a little related to food and heartburn. And the reason why I say heartburn, is because I burn more when I have heartburn. Does that make any sense to anyone? Also having V has made it very difficult to TTC. can't TTC when you can't have sex. I found this forum through google. I was apart of some facebook groups which I left them due to no one really being that supportive to others. They would only reply to certain members. I hope I have found a good place I can come and blow of some V steam. Talk to you later, hopefully.


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Re: New to this forum

Post  rhiannon75 on Sun Jan 13, 2013 9:05 pm

Hello Erica! I am so sorry you are also dealing with this. I am new here. You should read my post from last night, where I also talk about brown discharge and feeling like acid has been poured down there. I am not a big drinker at all, and because I am not when I had a few glasses of wine in September I felt frisky and was able tolerate sex with my husband of 12 years. I wonder if it has something to do with the relaxation of muscles, as I am just learning about "pelvic floor dysfunction." Anyway, it doesn't matter if I could have sex or not, the next days afterward were the start of this 4 month issue. I had the worst of it in November and it has calmed down but certainly not gone away.

I didn't put in my original post that at one time 13 years ago I tested postitive for HPV and had some cervical changes but follow up paps have always been normal and no HPV. I have no idea about that. At the time I was having horrendous smelling discharges and recurrent infections so I just accepted that it was HPV. But even when I was a virgin I was succeptible to yeast infections and in my first marriage I just knew my husband was cheating because I pretty much kept non-specific vaginitis and bacterial vaginosis and I always thought they were std's but they never were.

I shutter to think of all the chemicals I used to kill these infections over the years. I have also used spermicides before. I am thinking now that a product designed to "KILL" sperm cannot be good for delicate female tissues. In addition, I had a traumatic delivery at age 18 with my 19 year old son which resulted in 2 full days of pushing and him getting stuck in the birth canal. I know that my episotimy was a mess as well.

Sex with my husband has been hit or miss as far as pain goes. Only a handful of times that I can honestly say it was totally pain free, which is why I always preferred outer stimulation to orgasm instead of intercourse. But now, even that is resulting in spasms and pain and tenderness, including bladder pain, for days afterward.

And I have awful reflux issues too so I think there is a connection.

Last edited by rhiannon75 on Sun Jan 13, 2013 9:07 pm; edited 1 time in total (Reason for editing : left out info)


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Re: New to this forum

Post  Alana3 on Mon Jan 14, 2013 6:31 pm


I'm from Florida too, where are you located?


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Re: New to this forum

Post  Chloe4 on Mon Jan 14, 2013 11:03 pm

Hey I am new on here too

I was recently diagnosed with vulvodynia. I was really scared about what was wrong with me for a long time and so it took me around 3 years to actually ask for help and go to my doctor. After reading other people's posts on here and on other information sites I think I have been quite lucky. I had very understanding doctors who listened to me which was so reassuring, I was worried it was all in my head. I have never bee able to have sex. I have a high pain threshold but it is just not a pain I can power through. I am 20 and from the first time I tried to have sex guys weren't that understanding of what it was like for me. I had pretty much surrendered to the idea that I would never be able to have sex and given up on relationships when I met my current boyfriend. He is so understanding and he even came with me to the doctor's appointment when I got diagnosed.

I have been given anesthetic cream to try but I am still really nervous. I know my boyfriend is really understanding but I don't want a repeat of previous situations. It's reassuring to realize I'm not the only one to go through this. It is difficult to talk about it with friends who don't know what it is like.


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maca, supplements

Post  lavrose on Tue Jan 22, 2013 8:46 pm

Since it started with an infection, it sounds like an infection. So many people Ive read on different forums all say their IC and VV started with a really bad yeast or bladder infection. I know how you feel, when I was having serious problems, I had to get drunk too, to have sex, it was a searing, burning pain, and you just couldnt wait to get it over.

If your having brown discharge it sounds like your hormones may be oof balance and adding to feeling"off" down there, I know vaginal dryness was another one of my major problems too, before I started taking herbal supplements.

I would start with Dong Quai herb, and Maca powder supplements. The Maca you need to put in a smoothie, like a TBSP every morning. Please google and research, its wonderful.

I put mine in a rice milk, yogurt, strawberry banana, raq honey smoothie every morning, (I freeze the bananas and strawberries).

It so worth it, you will get your sex life, and a healthy libido back too.

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oops.. :)

Post  lavrose on Tue Jan 22, 2013 8:46 pm

RAW honey, sorry Smile

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Re: New to this forum

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