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» What's next?
Yesterday at 4:01 pm by jennyk2

» Pain management - what works for me
Yesterday at 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


Newby not sure where to turn

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Newby not sure where to turn

Post  Cerjo87 on Thu Feb 01, 2018 3:32 pm

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d already the amatrimtaline and it didn’t work and I was not keen .  I’ve asked to be referred to a specialist to a proper clinic but she refused asking why I need to be referred. She said about seeking physiotherapist I asked if she could refer me for that again I got a no , apparently that is something I will have to pay privately for  which I can’t afford, I feel so lost and I’m so tired of it all now , it’s effecting my relationship with my husband, if anyone knows of any help there is out there I would really appreciate it , I live in the Oxfordshire area . Please help

Cerjo87

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GP

Post  VVSSufferer on Thu Feb 01, 2018 4:35 pm

Hey Girl! First of all, I'm sorry that this is happening to you.
I am also from England and faced some of the same problems as you, my GP refused to send me to a consultant I wanted.
The one she sent me to instead was terrible and left me in tears.

First of all, did you know you have a LEGAL right to choose your consultant?
'You have the right to choose a particular team headed by a named consultant for your first outpatient appointment, provided that the doctor referring you agrees that your choice is clinically appropriate. You can choose a team based at any hospital'

If your doctor does not refer you for treatment, say this is severely affecting your mental health and you will make a complaint to the CGC.
More info on that here:https://www.citizensadvice.org.uk/health/nhs-healthcare/nhs-patients-rights/
https://www.nhs.uk/chq/pages/902.aspx?categoryid=68&subcategoryid=162

Do you only have pain having sex/with insertion? Did you always have pain since your first attempt at intercourse? Is your pain constant? You may want to consider Surgery/Botox.

If you want to talk privately, feel free to message me Smile

VVSSufferer

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Re: Newby not sure where to turn

Post  sarisbaris on Tue Feb 13, 2018 6:07 am

I'm so sorry for your pain! I battled V for 15 years and I consider myself cured. Here's my blog. I followed the protocol by Anthony William. According to him cystitis is caused by an unknown/currently undectable strep virus. It can also cause vaginal burning. So I'm guessing you have strep. Don't worry about spending more money on doctors, they currently don't know what's going on. I've seen probably 20 western docs and countless alternative ones. Many of them were specialists and still had no clue.

Here's my blog...
http://myvulvodyniacure.blogspot.com/2016/12/if-you-are-in-pain.html

Here's more info on strep...
http://www.medicalmedium.com/blog/streptococcus-revealed

If you need to chat....
sarahcamp20@gmail.com

I had to do this by myself and I wouldn't wish that on anyone. Please reach out.
Sarah

sarisbaris

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Re: Newby not sure where to turn

Post  Cerjo87 on Tue Feb 13, 2018 8:06 am

Thank you for your message, I’ve been reading your blog and it dose nake some sense I suffer with irritable bowl and sinus issues, I suffer with really bad bloating as well . Although I have the feelings of cystitis the doctor tells me there is no infection they can see , but could that still be strep ? Also where can I get the ingredients for your drink please I’ve never heard of them ?

Thank you again x

Cerjo87

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Re: Newby not sure where to turn

Post  sarisbaris on Tue Feb 13, 2018 2:10 pm

Yes, it looks like you have strep. Yes the cystitis is strep as well. The doctors don't have the technology yet to detect these things. They've gotten a little better in 15 years during my battle but it's not good enough.

I actually might recommend something slightly different for you. Can you do me a favor? Email a list of your ailments (even things that you don't think are related because everything is related Wink plus a list of what you generally eat during the week. Break the food down into breakfasts, lunches, dinners, snacks and drinks. Strep feed on specific foods so you must remove those foods as well as take some supplements. It's not difficult but you'll be fighting strep in your kitchen Wink

I've been doing this for a few months with other women who are battling V and it seems to work better when I personalize something for them. I'm not a practitioner. I just fought my battle alone for 15 years and it was devastating. I'm just trying to help.

Sarah
sarahcamp20@gmail.com

PS - Start listening to more of his shows. I list the most pertinent ones to V on my blog. The more you know the better equipped you'll be to fighting this. All these viruses aren't strong, you just need to know how to kill them. I found that very true in my case.

sarisbaris

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Re: Newby not sure where to turn

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