Vulvodynia Support
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» Hope to all my suffering ladies
A Sulphate Allergy - My Story of Provoked Vestibulodynia  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
A Sulphate Allergy - My Story of Provoked Vestibulodynia  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
A Sulphate Allergy - My Story of Provoked Vestibulodynia  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
A Sulphate Allergy - My Story of Provoked Vestibulodynia  EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
A Sulphate Allergy - My Story of Provoked Vestibulodynia  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
A Sulphate Allergy - My Story of Provoked Vestibulodynia  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
A Sulphate Allergy - My Story of Provoked Vestibulodynia  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
A Sulphate Allergy - My Story of Provoked Vestibulodynia  EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
A Sulphate Allergy - My Story of Provoked Vestibulodynia  EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


A Sulphate Allergy - My Story of Provoked Vestibulodynia

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A Sulphate Allergy - My Story of Provoked Vestibulodynia  Empty A Sulphate Allergy - My Story of Provoked Vestibulodynia

Post  web96 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
web96
web96

Posts : 24
Join date : 2015-03-15
Location : Canada

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Post  web96 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
web96
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Post  emalita 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

emalita

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Post  web96 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
web96
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Post  emalita 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.

emalita

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Post  web96 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
web96
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Post  web96 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
web96
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Post  web96 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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