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» Vestibulectomy today and no pain
Today at 3:28 pm by Dsrt16

» vestibulectomy success
Yesterday at 12:41 am by Hopeitworks

» MY STORY & Vestibulectomy 2/8/17
Yesterday at 12:06 am by Jgreen81

» Pain aftee vestibulectimy
Yesterday at 12:03 am by Jgreen81

» Freaking out because I don't think surgery worked HELP!!!!
Yesterday at 12:01 am by Jgreen81

» Vulvodynia help
Wed Nov 15, 2017 1:04 pm by ekaterina1996

» FACEBOOK VULVODYNIA SUPPORT GROUP (SECRET)
Tue Nov 14, 2017 9:53 pm by Dsrt16

» Needing some reassurance
Sun Nov 12, 2017 3:04 pm by Nicmay

» Vulvodynia burning mouth and bladder discomfort
Fri Nov 10, 2017 7:26 pm by Zbrown

Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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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: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

Comments: 0

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

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


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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