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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


Hi,a newbie here who's at the end of her rope :(

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Hi,a newbie here who's at the end of her rope :(

Post  deprived of sanity on Sun Jul 08, 2012 8:44 am

Hi everyone,
I'm not sure if I even have this but this forum seems like a good place to start. I have had this debilitating condition for 1 year that started off as burning everywhere,now its localised to two areas that range from burn to itch to irritation depending on what day it is,but it is always constant.. Ive had numerous STD checks,spent thousands of dollars on different gyno's.dermo's and other specialists and I still don't have a diagnosis. A recent biopsy after 1 year of dealing with this revealed Lichen Simplex Chronicus but thats about all. I have been suicidal with this condition and the pain associated with it.When i get thrush it makes the situation all the worse. I feel like I never want to have sex again,I've lost any desire for for it.My condition is irritated by excersise,friction,hair growing back there,sweat,sex,any contact Sad
I am dying for the day when I can wake up and not feel vulva pain.Just writing these words is making me cry.It's not something you can discuss nor want to with people.
There's even been implication by gp's that it could be psychosomatic.Are you kidding me?? I'm currently taking antidepressants,steroid tablets and using Advantan Fatty ointment morning and night. I'm not seeing much improvement. Does anyone know of any groups in Brisbane that exist? I'm 36 and feel like I'm going crazy with this.
Is there any hope for people like me?

deprived of sanity

Posts : 4
Join date : 2012-07-08
Location : Australia

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Situation similar

Post  jmcmil on Mon Jul 09, 2012 2:57 am

Hello, Oh my gosh..I can totally relate to what you just wrote. I am 36 and will be 37 next month. I have a constant burning down there and everything can aggravate it too, from hair growing back, exercise, walking long distances, wearing underwear, etc..you name it. I was also diagnosed with Lichen Simplex Chronicus, as well as vulvodynia. I don't know the difference and to tell you the truth, I don't think the doctors do either! It has been very frustrating and debilitating. I have had this for 7 months and give up hope all of the time. Today has been a very low day for me because the burn has been worse today for some reason. I constantly don't know how to plan my day because of my pain/burning. I hate wearing clothes. I am on a low dose of Amitryptaline, however when I increased it to 75 mg, it didn't really help so I lowered the dose back down. I like you have spent numerous of dollars on doctors, tests, products, prescriptions, you name it to still be miserable and suffering. I read where you are using Advantan Fatty ointment. What is that? Please don't feel alone and feel free to reach out to me anytime. I'm glad to find someone I can relate to, however pray that we find the relief that we deserve!

Take Care,
Jackie

jmcmil

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Location : US

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there's always hope

Post  toosore on Thu Jul 12, 2012 11:46 pm

You are certainly not alone - and your problem is not in your head! I can relate to what you are going through - I have the same troubles - bothered by my own pubic hair touching me! And don't even mention peeing and wiping - ouch! I've had this for years and found a few things that help. Amy Stein's book Healing Pelvic Pain is very good - well worth getting. Narcotic pain killers help me, but I limit their use to extreme flares when I feel like death is preferable. I figure then that it's okay to take one pill, rather than the whole bottle! LOL! I use hydromorphone, and I am very sensitive to meds, so the lowest dose of 2 mg is enough to help. I take it with some tylenol and coffee, which helps to increase the pain killing effect and stop the "high" feeling. I was told by the vulvar specialist that I should treat the pain like any other pain condition, with pain medications, such as ibuprofen or tylenol. I find those OTC products too weak now, so I use stonger prescription meds as well. I have found that any kind of cream usually just burns more.

When this condition gets bad, it is life altering. But it doesn't need to be life ending. You need better pain management from your doctor. And do not doubt yourself - it is not a psychological illness - it's psychologically distressing, but not caused by any sort of mental problems. Studies have confirmed this. Hang in there, and keep seeing the doc until you get some relief. Maybe a referral to a pain specialist, if your doc doesn't want to give you anything stronger. Good luck. Hope you find some help soon.

toosore

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Location : Vancouver

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hi

Post  grassy on Sat Jul 21, 2012 7:53 pm

At one point i was told i had lichen planus. So after googling that, i was totally shocked to read that a couple of blood pressure medicines i was on were known to cause it. One being HCTZ. google your medicines, google the lichen simplex along with any medicines you may be on. It may be a long shot, but what the heck. worth a try. Now a days you never know. cindy

grassy

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Re: Hi,a newbie here who's at the end of her rope :(

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