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Yesterday at 4:01 pm by jennyk2

» Pain management - what works for me
Yesterday at 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

» Custom made leggings?
Sun Apr 22, 2018 4:52 am by CatJones

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

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: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


A Sulphate Allergy - My Story of Provoked Vestibulodynia

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A Sulphate Allergy - My Story of Provoked Vestibulodynia

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

I have had Provoked Vestibulodynia (also known as VVS) since I was at least 12, which I first became aware of while using an Always period pad that I had a reaction to. I experienced pain upon even slight provocation (tampon strings, ointment application, ect.) the entrance of my vagina. The pain I experienced was an instantaneous, severe, and hot burning/stabbing pain that partially subsided after pressure was removed but could still linger for up to an hour+ after. The only immediate relief I found was to douse the area with icey cold water from the shower. Since the onset of my condition I had always experienced painful periods because the excess moisture caused chaffing, exacerbating the condition.

Since bringing the issue to my GP and being referred to a Gynaecologist, 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 Gyne nor my GP had been able to provide me with much relief. I had never had penetrative sexual intercourse because I knew that the pain I would experience upon penetration would be unbearable. Tampons themselves was a game of angles. 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 Behavioural Therapy, hard to swallow. Being treated psychologically before my physical symptom were resolved seemed as though my pain was not being sufficiently validated.

Here’s the good part; sunny

Late 2014, after much desperate internet searching, I happened upon a blog of a woman who had very similar experience to mine (see link below). She stated that, after unassumingly switching to natural, detergent-free shampoos, conditioners, body washes, etc. that her pain had gone away. She was able to have pain free intercourse and live a normal life! At the time, I had been using an Aveeno Skin Relief body wash, drugstore shampoo and conditioner and I believe Dove bar soap. Nothing that seemed out of the ordinary. But, given my history with failed treatments (and sensitive skin), I felt as though I didn’t have anything to lose in trying!

So I switch ALL my products to natural, vegetable oil based ones, and within 1 month I noticed about a 50-60% reduction in pain/irritation! At the same time I also switched my laundry soap to an 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 - *discontinued this treatment summer of 2015*). 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 80% gone.

So, in conclusion, I believe my PVD has been caused by a sulphate allergy to the detergents in the soap products that were making contact with and keeping the glands/nerves in the vestibule (entrance to the vagina) in a persistent state of irritation.

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 have used:

• Dr. Bronners Pure Castille Soaps
• 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.

Best of luck to every woman and girl out there reading this! Let me know if you have any questions! Like a Star @ heaven


Last edited by web96 on Fri Sep 22, 2017 3:44 am; edited 17 times in total
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Re: A Sulphate Allergy - My Story of Provoked Vestibulodynia

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

Update!

Like I mentioned before, I have seen about an 80% 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 plan to undergo 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 Fri Sep 22, 2017 3:45 am; edited 2 times in total
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Re: A Sulphate Allergy - My Story of 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: A Sulphate Allergy - My Story of 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: A Sulphate Allergy - My Story of 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: A Sulphate Allergy - My Story of 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: A Sulphate Allergy - My Story of 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: A Sulphate Allergy - My Story of Provoked Vestibulodynia

Post  web96 on Fri Sep 22, 2017 2:55 am

Update!

I had my first appointment with the Multidisciplinary Vulvodynia Program at the Women's Clinic in Vancouver! It consisted of a consult with a Gyne, an exam and a sit down with the program coordinator! I have been approved for the program and will be starting hopefully February of 2018.

In the mean time I've been given a compounded Rx of lidocaine 5% in a galaxal base (supposedly non irritating) for use twice daily to calm the vestibule nerves. I've never used a daily treatment of lidocaine, nor one this strong (usually use lidocaine 2%) so I'm excited to see if, with regular use, it will help.

Other than that things have been consistent. Still at about 20% of the original pain level, avoiding sodium laurel/laureth sulphate and derivatives in my soaps and washes. I've also stopped consuming diary because I've learned that it flares my eczema. I think maybe this diet change has helped a bit? *sigh* Maybe I'm just being optimistic Wink
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Re: A Sulphate Allergy - My Story of Provoked Vestibulodynia

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