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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

Is there anyone out there with these conditions!! Need Suggestions!!

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Is there anyone out there with these conditions!! Need Suggestions!!

Post  painful on Sun Jul 17, 2011 4:57 pm

Hello everyone,

I've just joined this forum and would like to share my story and like to find out if anyone out there in same condition?

I am 23 old and my symptoms started about 4 yrs ago with yeast infection. I have very severe bacterial/ yeast infection where i don't have a relive from all the painful symptoms and discharges not even for one hour. I have been continousally examined by many different doctors have done so many procedures but other than yeast infection no dr had anything to say. Its very irritating, but more than that My Biggest Problem is SEX. I have been in a relationship with One guy all over my life and never had a good sex. Every time we try its seems to be impossible for me. He is very understanding unlike other guys, but now it seems like i am loosing him. He always asks me when its going to get fixed??
Recently, after taking all the Antibiotics and treatments when nothing was working, my Gynecologist referred me to a Vulvo specialist. After my visit, my dr says i have Vulvodynia due to bacterial infection. He gave me Antibiotics for yeast and Estrogen cream. and he says if nothing works i can go for surgery. Its been one month i have taking the medications and i have no relive from the pain and other symptoms. I really cant take this anymore. Even if we try to have sex, its feels soo swollen and like an acid being poured on the cut. Another option he mentioned was Botox injection. But i really dont want this.I am thinking to go for surgery.

Is Going for Surgery a good idea? Has anyone out there have done the surgery and have they found any relive or any complications came across with. Please share your ideas.



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Re: Is there anyone out there with these conditions!! Need Suggestions!!

Post  Sebby (Admin) on Sun Jul 17, 2011 9:16 pm

Hi and welcome to the forum

From what I know of surgury can work but its a huge thing to go through and for me it would be the last option. It seems your gynea has not mentioned anything to do with Pelvic Floor therapy or biofeedback? Not suprising as most drs know little about it.

I would like to know if you have actually tested positive for yeast/bacteria recently? It seems drs are all to quick to give out creams and antibiotics/antifungals even when the women has not tested positive. Its like they do not know what else to do. Make sure firstly that you are tested again to make sure no yeast or bacteria infection is still present.

Then start researching other available treatments. Many women including myself are looking into Pelvic Floor therapy (mine is specifically from www.vulvodynia.com) Dr Glazers biofeedback protocol. I have had a break for a few weeks as had to have another vaginal sensor shipped over. You can also look for a Women's Physical Therapist. Check that they have treated the condition before.

Get yourself a copy of 'The Vulvodynia Survival Guide' Glazer & Rodke for a good all round intro to the condition and treatments.

Also a book many recommend is 'Ending Female Pain' Isa Herrera - she concentrates also on the Pelvic Floor theory. That an unstable and tight Pelvic Floor causes continued pain after the original trauma (either infection or injury) and prevents the vulval skin from healing and proper blood supply getting to the vulvar

Another option is medication used for nerve pain. Either an antidepressant like Amitriptyline or anticonvulsants like Pregabalin. I am on Pregabalin. I feel that it was working coupled with the biofeedback but had a bad flare up recently since being unable to do the exercises so do not feel they work just on there own without other physical treatments.

Im not saying you cannot try surgury but that it would be useful to look into less invasive treatments first.

We have all had to pretty much research this condition and treatments ourselves due to a lot of the medical community knowning little about it. So if a doctor says there is nothing much more they can do for you....check with us first! and as you learn more you will know what is worth trying and what options you have.

As for sex another good book to get is 'Let Me Count The Ways' discovering great sex without intercourse. Klein & Robbins - Im not saying that you will never be able to have good intercourse with little or no pain. But it is true that we have to be very creative with this condition. Try what least hurts to keep the intimacy whether that is oral or touching. Try to experience pleasure again so your brain is not always linking your Vulva to pain.

This is a lot of info to take in so do some research and dont give up trying to find an answer to your pain.

Take Care


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Re: Is there anyone out there with these conditions!! Need Suggestions!!

Post  Zazu on Mon Jul 18, 2011 2:07 pm

Hi there,
If you read the recent posts on this forum, you'll find that many women have a similar story - it starts with an infection and then the pain continues, even after the infection has cleared. The pain can be due to hormones, too many nerve endings that sense pain which grow after a sustained immune response to infection, or pelvic muscle problems. Sarah already gave you a great, detailed response on the treatments for this.

I'm surprised, too, to hear that your doctor has only given you one option before the surgery. Usually, they try a topical cream (like estrogen). If that doesn't work, then they can give you a compound cream using drugs that work on the nerve system to calm your nerves (gabapentin or amitriptyline). If that doesn't work then they give you those drugs in pill form, usually amitriptyline (a low dose antidepressant), then gabapentin or pregabalin (an anti-epileptic).

Personally I'd look into a book called "When Sex Hurts' by Dr. Goldstein for a detailed explanation of causes, symptoms and treatment options. Surgery can be quite successful, but it also carries risks. Usually it is more successful if you get physiotherapy alongside it, so that's really key to look into.

Best to you


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Re: Is there anyone out there with these conditions!! Need Suggestions!!

Post  Sarah001 on Tue Jul 19, 2011 7:31 pm

I'm with the other girls on this one, surgery isn't a small thing and should only be considered as a last option after PF therapy, medication etc. All the books above are worth a read but I would try Amy Stein's "Heal Pelvic Pain" first as it's very inexpensive and covers much the same as Isa Herrera's book which is alot more expensive. "When Sex Hurts" is also very good, especially for figuring out what your problem is caused by. Don't rush into surgery just because a Dr can't be arsed to look into current treatment options, there are women out there who have been made worse by surgery so it's a very serious decision. The pelvic floor is something all women with V should get checked properly by a physio who uses biofeedback, it's the only reliable way to see exactly what's happening with those muscles.

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