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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

New and lost

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New and lost

Post  Redhead23 on Fri Apr 17, 2015 7:15 pm

Hey ladies.

I'm at a stage in my life where my vulva pain has completely taken over. I'm depressed and even suicidal and after crying a ton today, decided to look for support.

I'm from the UK, I'm 31 and I've suffered with pain, burning and stinging of the vulva, clitoris and vestibule for 12years after a yeast infection and a bladder infection.

I've struggled over the last decade trying to get doctors to believe me. One told me there's nothing they can do, one basically told me to go away and live with it. I've been given lidocane and amitryptiline in the past but neither changed anything.

My symptoms are worse just before and during my period, at the same time I have what I call a bladder flare up. I feel a heavy feeling like my bladder is falling out, it hurts to pee and I feel the constant fullness of needing to go to the toilet. Along with the pain, stinging and 19 day periods I experience my life is hell at the moment.

I honestly don't know which way to turn at this point. I saw a gynecologist who was only interested in looking into my periods. His answer was the implant, but like contraceptive pills in the past they only made my stinging worse, which he didn't believe, anyway the implant is now out but the pain hasn't reduced. I've been left unable to function. I can't sit down and I spend my days crying because I honestly don't know where to go next.

I have a joint condition which includes weak muscle stability and twisted up joints, this includes a bad back and often wondered if its all connected.

My partner found this site for me and suggested I join. So here I am. Hoping the girls here have some advice for me.

So hello to everyone here. R xx


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Re: New and lost

Post  x_chelss@live.com on Sat Apr 18, 2015 4:49 pm

Hi. I'm 19 and from Birmingham. I was like you two nearly three years ago I seen countless amount of doctors and none could diagnose me! I went to different hospitals and I ended up at Solihull hospital I seen a lady called doctor Hutchon. She is the woman who made my life better by diagnosing me but worse knowin there was no straight forward cure, after a year of pointless tablets not working I decided to go private at the BMI Priory, in Edgbaston (I don't know where your from) and I seen a man called Professor Luesley, he is a specialist in gynocology and noes a lot about vulvodynia. If your not to far from Birmingham/Edgbaston I would recommend you see him, his appointments range from £150-£200 but you will not be disappointed he made my life better after one appointment. He offered me surgery, and I had that on 28/01/15 I haven't looked back since!

Good luck x


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Re: New and lost

Post  MensRea on Mon Apr 20, 2015 1:23 am

Hey Cheiss. I am new here! I have read all your topics regarding your vestibulectomy and i would like to ask how much did you pay for the surgery.
Thanks in advance Smile


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RE: New and lost

Post  sarisbaris on Tue Apr 21, 2015 1:41 am

Please please read my post titled "Cured from vulvodynia - I've been pain free for over a year... please read" I really was cured a year ago... while I was super pregnant as well.  Please consider this option before surgery.  Unfortunately the vagina baffles western medicine. I saw so many western doctors who couldn't help. I realized over time that they really wanted to help but didn't have the knowledge, the understanding nor the cure. Some doctors would dismiss me, other would deny my pain, others would be angry and the best ones would be truthful and confess they couldn't help. This is the worst thing about vulvodynia.

This is first paragraph:
I had vulvodynia on and off for 15 years. (I have probably seen 15+ western doctors plus specialists in San Francisco). I tried acupuncture and TCM herbalists which helped but wasn't a cure. I got pregnant and it was horrible. I found a practitioner of Acupoint Nutritional (or Integrative) Testing who finally pinpointed the cause of my pain and alleviated my pain in a few months. It was a slow progress (a few months) but it was a permanent fix. Basically she just gave me a bunch of pills that were all herbal and natural. I was pregnant at the time. I'm so grateful. (This won't allow me to add a link but just google Acupoint Nutritional (or Integrative) Testing.  They have bad online presence, so if that doesn't work google Dawn Dolan in Cotati, CA. She can find someone in your area. Basically, she uses applied kinesiology to figure out the cause of my the problem and the remedy. Sounds crazy but it worked! Now I've been pain free for over a year!  She said that if you are not in the northern California area she can help you find a practitioner who can help. This is legit.  I'm sorry I didn't post sooner, I've been busy with my baby. If you're reading this and you're in pain my heart goes out to you. That pain was freakin unbelievable. Please give this a shot. Let me know if you have any questions.

(see my post for the rest)

Note: I just looked online and unfortunately they have the worst web presence. Sigh. I'll see what I can find out from my doc and see if there is a directory or any in the UK.


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Re: New and lost

Post  Redhead23 on Tue Apr 21, 2015 11:18 am

Thank you ladies. Im gonna get around to reading as many posts as I can and see if theres anything I can try. I see my doctor on Friday so I wanna go armed with some info for her. Sadly today I'm very ill with my other condition and haven't had the strength to do much but sleep. I'll definitely look into your suggestions. Im in the north east of England by the way x


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Similar symptoms

Post  Barbie2 on Fri May 01, 2015 1:13 pm

Hi I am from Manchester, have struggled for 5 yrs clitoral, vulval, burning, pins and needles, heavy bladders feeling in morning, has settled mainly to left, I am on max dose lyrica tried pt in London, nothing picked up, any questions feel free to ask.


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Re: New and Lost

Post  Nat0511 on Wed May 06, 2015 10:05 am

Hello there,

I am so sorry to hear that it is all getting too much, although I completely understand. It is beyond words how awful it is to live with debilitating and socially awkward conditions that are under researched and badly diagnosed. You have my complete sympathy.

I wanted to offer some help though - I have vulvodynia and i used to have chronic cystitis and thrush too - I was on a constant cycle of cystitis, antibiotics, thrush, and I was so, so miserable. In desperation one day I searched for cystitis self help books and I found one on Amazon by Angela Kilmartin called 'Urinary Infection - Sexual Cysitits'. She offers help for both sexual and interstitial cystitis. But basically it was a massive revelation and I am completely baffled as to why her advice isn't the first thing mentioned by any GP worth their salt, instead of ruining your immune system with antibiotics, poking and prodding you. Basically, Angela's advice is that non interstitial cystitis is a direct result of faecal matter travelling from your anus to your urethra and the only way to stop the infection is to stop this happening. She teaches a way to wash after defecation and before intercourse using a water bottle and soap. I did this for a while, although it is a bit of a nuisance, and I literally never got cystitis again. After some time, I thought I might try the unscented moist toilet tissues that you can buy as carrying around water bottles, soap and flannels all the time was a bit of a pain. And it worked!! I keep a pack of moist tissues is my handbag and one by the toilet at home. I use them after every stool, before bed, before sex, and after sex (just on my anus), and they seriously work. I had cystitis every other week from when I became sexually active aged 20 until I read Angela's book last year, aged 29. I'm now 30 and been free of cystitis for 1 year. And being free of cystitis has also freed me from thrush as my immune system and PH balance is better. The vulvodyina is another matter but feeling in control of my cystitis has helped me feel better about myself and more able to cope.

I hope this is of use to you and I send you lots of encouragement and understanding about what you're going through.



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Re: New and lost

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