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» Post Vestibulectomy
Tue Aug 22, 2017 6:48 pm by JGD13

» Vestibulectomy
Fri Aug 18, 2017 12:39 pm by Hopeitworks

» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

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

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: 4

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). …

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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

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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: 0


The Sudsy Culprit, aka How I cured my Provoked Vestibulodynia

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The Sudsy Culprit, aka How I cured my Provoked Vestibulodynia

Post  web96 on Mon Mar 23, 2015 4:02 am

I have posted this a couple of times on here because I am trying to reach other as many women as I can with my condition. Here is my story of relief after 6+ years of pain.

I have had Provoked Vestibulodynia (Also known as VVS) since I was at least 12. I first became aware of pain during my first attempts to insert a tampon. I experienced pain upon even the slightest provocation to the back of the opening of my vagina. The pain I experienced was a severe hot burning/stabbing pain that subsided mostly after pressure was removed but would still linger for up to an hour after. The only immediate relief I found was to douse the area with ice cold water from the shower. I had always experienced painful period because the excess moisture caused chaffing, exacerbating the condition.

Since bringing the issue to my GP and being referred to a Gynecologist, I have had countless yeast swabs performed, test for various infections done, and creams and vaginal suppositories prescribed. I tried going on hormonal birth control, and off again. I tried switching feminine hygiene products. Neither my Gyno nor my GP had been able to provide me with any relief. I had never had penetrative sexual intercourse because I knew that the pain I would experience upon penetration would be unbearable. I was starting to look into multi disciplinary programs and options such as surgery (vestibulectomy), though if found some of the treatments, such as Cognitive Behavioral Therapy, hard to swallow. Being treated psychologically for a physical symptom seemed as though my pain was not being sufficiently recognized.

Here’s the good part;

Then I happened upon a blog of a woman who had very similar experience to mine (see link below). She stated that, after switching unassumingly to completely all-natural shampoos, conditioners, body washes, etc. that her pain had finally been relieved. She was able to have pain free intercourse. I have always had a bit of mild eczema on and off, and I am quite sensitive to body lotions. I had been using an Aveeno Skin Relief body wash, regular shampoo and conditioner and I believe Dove bar soap. Given my history with failed treatment, I felt as though I didn’t have anything to lose. I switch my products to completely all natural, and within a month I noticed about a 50-60% pain reduction. At the same time I also switched my laundry soap to an all-natural brand. About 3 months after the switch, I saw a private MD that prescribed an HRT Estriol compound that I apply locally three times a week (Estriol helps to repair vaginal tissue). My pharmacist was able to compound it in coconut oil, as to a regular cream base to insure that it didn’t irritate my skin. It has been about 5 months since I first switched my bath products and the pain is about 90% gone. For good measure, I also use natural cotton feminine hygiene products, though I had been using them before my irritation subsided and it didn’t seem to improve the condition. In conclusion, I believe my PVD was caused by a sulfate allergy to the detergents in the products that were making contact with and severely irritating the glands in the vestibule area.

Here is the link to the blog that I gained my information from:

http://www.experienceproject.com/stories/Have-Vulvar-Vestibulitis-Syndrome/1324024


This is a list of the products that I use:

• Dr. Bronners Pure Castille Soaps
• Chorus Global/Carina Organics Shampoo and Conditioner
• Mountain Sky Soaps
• Naty feminine hygiene products
• Organyc feminine hygiene products
• Nellie’s All Natural Laundry Soap

There are many other brands that would be suitable to use also. Just remember to read the ingredient label! A lot of labels such as “mild” and “contains natural ingredients” can be misleading. I often use handcrafted natural bath products that I purchase at a local farmers market as well.

I hope my story can help other women and girls. Best of luck to you! Let me know if you have any questions!


Last edited by web96 on Sun Jul 30, 2017 5:58 am; edited 9 times in total
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Re: The Sudsy Culprit, aka How I cured my Provoked Vestibulodynia

Post  web96 on Thu Sep 24, 2015 7:19 am

Update!

Like I mentioned before, I have seen about an 80-90% decrease in pain, and happily continue to use my natural sulphate free bathing products (faithfully packing them with me on all trips!). But I still currently have some burning discomfort with direct pressure to the area. Now that the source of irritation is gone, I am left with a residual nerve pain (allodynia), as the name Provoked Vestibulodynia or Vulvodynia suggests. Applying Lidocaine is a temporary solution, but isn't 100% effective and relief wears off after a half hour.

So, I will be undergoing Prolotherapy/Nueral Therapy, that is, injections (ouch!) of dextrose solution with Lidocaine over the next few months as a final treatment to this problem. In treating this now as chronic nerve pain, I am feeling quite hopeful!


Last edited by web96 on Tue Jul 19, 2016 9:28 pm; edited 1 time in total
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Re: The Sudsy Culprit, aka How I cured my Provoked Vestibulodynia

Post  emalita on Tue Jul 19, 2016 7:28 pm

Hi web96,

I wanted to see how you've been since your last update.

Do you still use estrogen? That's the only treatment my specialist has prescribed for me at this point (bioidentical Estradiol and Estrone in a compounded tablet since I don't handle other bases well), and I'm not really seeing any improvements after about 3 or 4 months of using it. He just keeps telling me to "give it more time" and ups my dosage Crying or Very sad

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Re: The Sudsy Culprit, aka How I cured my Provoked Vestibulodynia

Post  web96 on Sun Sep 04, 2016 4:52 am

Hey emalita!

I'm doing pretty well thanks. Unfortunately my gyno said it wouldn't be possible to treat me with the injections, which was disappointing. I no longer use the estrogen cream. It helped bring down the initial irritation, but now that that's gone and the tissue is healthy it doesn't do much for me. Things remain relatively the same, I suppose progress has plateaued a bit. I can't complain to much though. I am able to live a normal life now, with the occasional help of lidocaine! I've also very recently switched my toilet paper to a natural one free of bleach, dye etc. because I had heard that it helped some women. Worth a try anyways. I'm open to whatever could improve things.

How are you doing with your estrogen treatment?


Last edited by web96 on Sun Sep 04, 2016 6:29 pm; edited 1 time in total
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Re: The Sudsy Culprit, aka How I cured my Provoked Vestibulodynia

Post  emalita on Sun Sep 04, 2016 1:05 pm

The estrogen I use is a vaginal tablet. I think it has helped with my internal health, but it doesn't seem to be having any positive impact on my vulvar skin unfortunately.

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Re: The Sudsy Culprit, aka How I cured my Provoked Vestibulodynia

Post  web96 on Sun Jul 30, 2017 5:38 am

UPDATE:

After a year long wait I've been admitted into a vulvar pain clinic in Vancouver for a 12 week program! I'm really hoping it will give me insight in how best to deal with my residual pain. Appointments include exams by specialists, physio sessions, and group support/counseling. I'll be able to meet and share with other women who suffer from the same condition in person for the first time! Travelling to and from the clinic will be an ordeal so I do hope it's worthwhile.

I started using the topical estrogen again when needed (estrone 0.1%) and continue with occasional application of lidocaine gel, usually after intercourse if the nerve pain happens to be triggered. In the odd very bad case I've taken to icing the vestibule Exclamation Things haven't gotten worse or better but I am perhaps more inconvenienced by it now because my sex life is more active.

I also started taking an SNRI antidepressant (for unrelated reasons) and am wondering if that may help my PVD in some ways as they can also be used to treat nerve pain. Would be a nice side benefit is all Razz
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Re: The Sudsy Culprit, aka How I cured my Provoked Vestibulodynia

Post  web96 on Sun Jul 30, 2017 5:44 am

Products I'm currently using flower

Nature's Bounty Herbal shampoo/conditioner
Mountain Sky vegetable oil soaps
Fresh face cleansers/moisturizers
AVEDA and ABBA hair styling products
ECO laundry detergent w/dryer balls
Naty feminine hygiene
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Re: The Sudsy Culprit, aka How I cured my Provoked Vestibulodynia

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