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

Fri May 27, 2016 6:50 am by Lucci

Hello,

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

Heya,

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


New and unsure!

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New and unsure!

Post  mollyashlie on Tue Dec 17, 2013 6:20 am

Hey ladies,
I just got diagnosed with vvs after seeing countless doctors and finally a gyno. All my swabs for yeast and bv have come back negative in the past 6 months since my symptoms started... although sometimes (like now) my symptoms feel more like a yeast infection than vulvodynia. I just wonder what you ladies have for symptoms..
I certainly have the tell tale signs like intense pain during intercourse - but sometimes it subsides if I "ride it out" (pun not intended), I also have localized pain in my vaginal entrance, which can be really severe.
but then I have intense intense itching almost non stop... and sometimes I even have a white discharge, nothing bad just... not normal.
My gyno gave me a lidocaine prescription which I will start tomorrow... I've been applying coconut oil but it barely does anything, still taking probiotics just to be sure... was taking them when doctors kept telling me "its probably yeast", even had one doctor assume bv so treated myself for that too. Boric acid would help me for a little bit before... maybe a day before I started feeling itching, but now that doesn't work. Baking soda baths help for a couple hours, I even had three whole days without any symptoms last week, which I think was thanks to two baking soda baths in two days. But mostly trying to keep away from applying to much gunk to my lady parts, because I've been doing that for 6 months straight and nothing has been effective in the long run. My gyno says she thinks its a nerve problem because it started 6 months ago which was when my and my partner got together - and she thinks it was a "traumatic vaginal event" which would make sense because my new partner gave me genital HSV-1 (which is pretty traumatic vaginally and mentally.)
I'm just at a loss and was hoping you could give me feed back on your symptoms!

mollyashlie

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Re: New and unsure!

Post  alessandria on Tue Dec 17, 2013 7:14 am

Hey mollyashlie!

Everyone with VVS has unique symptoms, to the point I'd think that each person on this site probably has a slightly different story. For me, I currently have provoked vaginal opening pain only, and only with penetration (however, I used to be much different, and had generalized pain with inflammation at all times). VVS has a zillion different etiologies, with the only common feature being that it results in pain. A few considerations for your specific case, though:

1) Have you ever gotten your vaginal pH assessed? A too-low vaginal pH can indicate an overabundance of the ordinarily good vaginal flora, lactobacilli acidophilus, and cause something called cytolytic vaginosis. This is a disorder in which the surface layer of vaginal skin (epithelium) is irritated so much by the excessive acidity of the bacteria, it becomes chemically burned and sloughs off. Discharge in this condition looks a lot like yeast discharge, but for an entirely different reason -- it is full of dead epithelial cells, which also have a white and chunky appearance. This is alleviated by sitz baths, which work to elevate vaginal pH. I'd consider finding out if you have any alterations in pH or lactobacillus, if the sitz baths work for you.

2) HSV-1 can be a source of nerve pain, because all herpes viruses make neurons their home upon infection. I don't think there's any body of research on HSV and vulvodynia, but it would make sense for it to cause inflammation to the nerves upon first infection. This may clear up on its own depending on how HSV and your body interact (it is almost always most intense on initial flare, and will stabilize over time; though there are exceptions).

3) Find a doctor you trust and who doesn't trivialize your symptoms, VVS is a challenging experience and you need a good team to work with. Don't be afraid of trying new things, like physical therapy, acupuncture, or changing your diet, because every single person will have a different trigger and therefore most likely a different solution, too. Some people also use surgery, and this is amazingly effective for some women. There is help out there and a light at the end of the tunnel, the key is not giving up.

alessandria

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Re: New and unsure!

Post  tinkerbelle2 on Tue Dec 17, 2013 9:42 am

Hey molly,

Welcome to the forum! I don't have much to suggest to you yet as but im in the same boat as you hun. I've not been able to shed much light on the cause of my own pain (unprovoked burning in vaginal opening & a little inside). It really is horrible, the fact it is constant and a really burning stinging acidic sore pain. It almost feels like a wound. Sad I'm so sick of living with it now. Just know you are not alone and we will get answers. Above poster had some really great suggestions! , I too will take those on board.
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tinkerbelle2

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Re: New and unsure!

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