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» What's next?
Tue Apr 24, 2018 4:01 pm by jennyk2

» Pain management - what works for me
Tue Apr 24, 2018 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


My almost 4 year old was diagnosed today

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My almost 4 year old was diagnosed today

Post  HazelsMum on Mon Aug 01, 2016 11:50 am

Hello

This morning my daughter was diagnosed with Vulvodynia. She has been suffering pain since she was 18months and it has taken over two years to get referred to a paediatrician who diagnosed her.

Her symptoms have been intense pain, normally at night. Now she is older she can tell us about it and she says she feels like her 'front bottom's is on fire. She is SO SO distressed when happens. Nothing consoles her. It is really upsetting for anyone who is with her as well, my poor dad was babysitting during one epidode and had to be talked out of calling an ambulance.

Whilst she has had some pain in the day, it normally only occurs at night. Her only relief is a cold pack between her legs, but that only helps a bit. Our GP ruled out UTI, thread worms and thrush.

The paediatrician this morning told me that she was very likely to grow out of it but to come back if it gets worse. I left feeling really reassured until I came home and Googled Vulvodynia....nowhere mentions growing out of it. I am really worried for my daughter now and her future well-being and relationships.

Does anyone have experience of very young children diagnosed with this?

HazelsMum

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Re: My almost 4 year old was diagnosed today

Post  emalita on Mon Aug 01, 2016 4:20 pm

I'm sure you've ruled out irritants, but I wanted to throw it out there just to be sure. Below are some of the top ones that come to mind, and just remember, it can take months or years for a reaction to show. So don't rule out things you've been using on her for a long time.

- Wipes: I was using flushable wipes for MANY years before I started to have a reaction to them. If you're using them on your daughter, it may be a really good idea to stop for a month or so to see if things improve.

- Laundry Stuff: Detergents, dryer sheets, fabric softeners, etc. Even the ones that say they are "gentle" contain tons of chemicals. Check out this website for the ratings of common laundry products: http://www.ewg.org/guides/subcategories/49-LaundryDetergentHE

- New Clothing: I have an allergy to unwashed new clothing where I break out into a bodysuit-type rash if I even brush up against unwashed clothing. I now need to wash my clothes at least 3 times before wearing them.

- Bath Products: Shampoo/conditioner, soap, body wash, bubble bath, etc.


I'm sorry your daughter is going through this, and I hope she finds relief soon.

emalita

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Re: My almost 4 year old was diagnosed today

Post  HazelsMum on Mon Aug 01, 2016 4:40 pm

Thanks for replying. My daughter has quite bad eczema so we are already pretty carefully with detergents chemicals in the house. She has special soaps etc in the bath. We've found no relationship between what's she's done during the day .(swimming, bath, what's she's eaten) and when she has an episode. It is so frustrating. I really want to be able to pin it on a particular trigger but haven't been able to identify one.


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Re: My almost 4 year old was diagnosed today

Post  emalita on Mon Aug 01, 2016 4:51 pm

My reactions didn't show themselves for maybe 24-72 hours after coming into contact with the irritant. So make sure to be expanding your daughter's symptom journal to things that she's come into contact with the last 3 days or so since chemicals have a sneaky way of hanging out in the body for a little bit before setting off a reaction.

It sounds like you've already done all this, and I'm sorry if I'm telling you things you already know. I just know how frustrating allergies can be since it took me so many years to identify my triggers because they were never as "obvious" as doctors and the internet made them sound like they should be  Wink

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Re: My almost 4 year old was diagnosed today

Post  Toobusy9561 on Fri Aug 26, 2016 9:52 pm

How did the doctor rule out worms?

I ask because there is an old thread on another site about children having pain, mostly at night. Once the lights are out. Many of them did the "tape" test and was negative but persisted and were able to see a worm. Apparently, they come from the rear but move up into the vagina as well and that's where the pain is. Some would wait until their children fell asleep and then flick on the light and do a quick check but others said to wait until they are sleep, use a flashlight and look because the light makes the worms pull back in so you won't see them.

Their descriptions of their children's symptoms sounded like yours. Some even had it for years.

It was also suggested to try a worm medication anyway just to be sure. These girls were in pain but once they treated for worms, they were fine.

I'm not sure if we can post off site links. If we can, then I will post it so you can read about it.

If not vulvodynia, then possible Lichen Sclerosus? Children are known to get this. Usually the vulva skin will have white patches or areas though.
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Re: My almost 4 year old was diagnosed today

Post  Pavloviandoggy on Tue Oct 04, 2016 3:27 am

Has the doctor ruled out lichen sclerosus? Vulvodynia-like symptoms can present themselves when girls are really young, but usually don't get diagnosed until later in life.

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Re: My almost 4 year old was diagnosed today

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