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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


SINCE I WAS 5

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SINCE I WAS 5

Post  omgitszoee on Sun Jan 05, 2014 9:11 am

Hello.. my names zoe (:
I have been going to the doctors with this problem since I was 5 ! back then they just assumed it was cystitis. as it got older it got more often, I was just when I got nervous and excited and now its a constant pain. im now 20 but I wasn't diagnosed until I was 16 !

Im on Gabapentin but im at the highest dose im aloud. I also have to take co-codamol most days. I Hate it so much as its very hard for me to keep a job because of how un reliable I can be Sad
luckily my current boss is very understanding but I hate letting her down and missing out on the money!

Im currentl seeing a physio who is very interested. she said I can tighten my pelvic floor but it takes a long time to relax? she has given me some exercise to do but this last week ive been off work every day with the pain !

ive not been abused or had any trauma as a child so I have no idea why it started so early. does it eventually just go away? I can not go out with friends because I must know I can get home if I need to and if I get too excited it will come on. ive not been able to drink like a normal teenager and I just want my life back :'(

when the pain is very bad I find the only thing that helps is holding ice on my fufu !!
Has anyone else had it for such a long time? how old where you all when you got vulvadynia?

omgitszoee

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Re: SINCE I WAS 5

Post  mary jane on Mon Jan 06, 2014 11:06 pm

aww you poor thing,only 19....i'm 26 and have had this crap for 5 months. I'm doing my second univ. but I manage by resting A LOT and taking medication.

you don't say what your symptoms are ....there is a big forum for intersitial cistytis with helpful posts, a lot of the girls there have overlapping conditions like urethra pain and vulvodynia, etc.

ic-network.com

I honestly recommend you to try a urogynaecologist

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mary jane

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Re: SINCE I WAS 5

Post  Alana3 on Mon Jan 06, 2014 11:44 pm

I used to not be able to drink either than it went away... I have no idea why. I used to get a lot of bladder infections but...? They went away I guess

Alana3

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Re: SINCE I WAS 5

Post  Alana3 on Mon Jan 06, 2014 11:44 pm

That wasnt helpful just trying to say you arent alone!

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Re: SINCE I WAS 5

Post  omgitszoee on Tue Jan 07, 2014 4:18 pm

thanks guys its good to know im not alone !
ive had my urine tested by the doctors a lot and no hope Sad

the exercise ive been given doesnt work as ive had 5 days of work off in the last 3 weeks !!

Hopefully next time i go to the physio she will try somthing else
Thnks though !

omgitszoee

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Re: SINCE I WAS 5

Post  omgitszoee on Tue Jan 07, 2014 4:19 pm

and it sort of feels like im being hit in the fufu with a spikey hammer thats on fire !! weird description

omgitszoee

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Re: since I was 5

Post  Sunflower82 on Sun Feb 02, 2014 8:49 pm

Dear Zoe,
Sorry to hear u have suffered for so long, I have had problems since I was 21 and I'm 32! I also suffered from cystitis when I was young about 8 ish I think ! Are u seeing a women's health Physio? What type of exercises were u doing! I've seen a women's health Physio for a couple of years now in the beginning it did get worse before it got better, half way through when I could know longer go I saw a Physio on the Nhs and it really didn't work out I didn't feel she listen to what I had to say and it seemed to be a set pattern of treatment,I had three sessions and the pain was so bad!

I stuck with the private Physio and this make a huge difference !

Hope this helps

Kt

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Re: SINCE I WAS 5

Post  omgitszoee on Tue Feb 04, 2014 5:36 pm

Awwah thats good to hear that someone else had it so young!! Yes im seeing a nhs one but she is great, she says we will sort it this year!! Ive been given some dialators to try! If they don't help she is sending me for scans to see if its a trapped nerve! Xx

omgitszoee

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Re: SINCE I WAS 5

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