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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 …

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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 …

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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 …

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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 …

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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 …

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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


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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