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» Had this for 5 years, looking for people who understand
Sun Nov 18, 2018 11:22 pm by srbry

» IMPORTANT FOR UK SUFFERERS
Sun Nov 18, 2018 8:42 pm by srbry

» Found relief after more than 15 years of pain!
Thu Oct 25, 2018 4:29 pm by AlwaysInPain

» Back pain, burning feet and vulvodynia....all related?
Sat Oct 20, 2018 3:50 am by lindsey_taylor

» Anyone have pain with urination?
Thu Oct 18, 2018 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6


How I cured my Provoked Vestibulodynia

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How I cured my Provoked Vestibulodynia

Post  web96 on Mon Mar 23, 2015 4:04 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. Skip to the last paragraph if you don't want to hear my history. 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 surgery options (vestubulectomy), 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 HTR 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 the irritated the glands in the 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 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 Tue Jul 19, 2016 9:36 pm; edited 8 times in total
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Re: How I cured my Provoked Vestibulodynia

Post  naomi on Tue Apr 21, 2015 11:58 pm

I'm just embarking into a more natural approach with the dreaded V so thank you for the link!

I have changed diet, taking supplements and ingesting coconut oil daily. Jojoba oil down there at least x3 times daily. Have bought some Faith in Nature shampoos and conditioners today.

I'll try anything now to gain some results. I'm 33 now and had this ongoing since 18. Too bloody long
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Re: How I cured my Provoked Vestibulodynia

Post  mrs.optimistic on Thu May 14, 2015 6:47 pm

Thank you!! I will give this a try and let you know how it goes. Congrats on pain free sex!

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Re: How I cured my Provoked Vestibulodynia

Post  naomi on Thu May 14, 2015 7:45 pm

Oh I wish I had pain free sex!!! I actually wish I had sex
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Re: How I cured my Provoked Vestibulodynia

Post  web96 on Sun May 17, 2015 4:16 am

naomi wrote:I'm just embarking into a more natural approach with the dreaded V so thank you for the link!

I have changed diet, taking supplements and ingesting coconut oil daily. Jojoba oil down there at least x3 times daily. Have bought some Faith in Nature shampoos and conditioners today.

I'll try anything now to gain some results. I'm 33 now and had this ongoing since 18. Too bloody long

Far too long indeed! How are things going for you? Have you noticed a reduction in your pain? I understand that after all the let downs from previously used pharmaceuticals that it can be hard to believe that they will work, but I would suggest another cream, called Estragyn. I have been applying it twice a day and it helps with the remaining mild irritation. You could ask your gyno about it if you're interested.
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Re: How I cured my Provoked Vestibulodynia

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