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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


Its not all in your head!!!

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Its not all in your head!!!

Post  Sebby (Admin) on Sat Dec 19, 2009 7:39 pm

After my horrible experience with the Gynae a few weeks ago I have decided that I will place some useful quotes on here from Dr Glazer's book that confirm Vulvodynia is not "in our head" and that our conditon should be treated as real and given the attention it deserves.
A friend told me recently that some doctors she had seen (for a different Gynae issue)find it particularly difficult when their patients do not "tick" their straight foward boxes for diagnosis and treatment. Thats what I have also found with most doctors I have seen regarding my Vulva pain. This does not mean that it is untreatable it just means a fair few options need to be looked at and tried and more doctors need to take an active interest in this condition.

Have a look a the following quotes from The Vulvodynia Survival Guide:

"Many doctors do not yet acknowlege the condition as a real problem with a physical component. Despite a wealth of documented scientific information demonstrating the absence of psychopathology in vulvar pain patients (Meana et al 1998a)." pg 5

"Psychological studies show that in spite of the emotional reactivity and depression and anxiety that may result from suffering vulva pain, Vulvodynia patients are not different from the normal population (Meana et al 1998a)" pg 26

"At some time or another, most vulva pain patients have been told that there is no adequate medical explanation for thier complaints. Unfortunatly the doctor and even the patient herself may believe her problem is psychological in origin. Next the physician may imply that the pain is somehow not real......for the record the pain does exist, it is real, it is not in your head"
pg 122

So remember this the next time your are told its all in your head, dont give up, there will be caring doctors out there you just need to plod on and keep fighting even when you feel tired and hopeless. Even after my bad experience a few weeks ago I know their are good doctors out there. I saw one last May as an NHS patient in a private hospital but unfortunatly before I could get re-refered the hospital decided it would no longer see NHS Patients, so I have found out he is working in my local NHS hospital and have insisted I am refered back to him. I will keep you informed of that outcome I just hope he continues to be as caring as I found him on my first visit!

... to end on a positive note: "Thankfully most women find one of many treatment options helpful and are able to enjoy daily life without pain. They even go back to enjoying fulfilling sex lives" pg 5 "The Vulvodyinia Survival Guide" Howard I Glazer, Ph.D & Gae Rodke, M.D., FACOG.

Take Care and have hope....
Sebby
xxxxxx

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Re: Its not all in your head!!!

Post  noni on Sat Apr 02, 2011 12:28 am

Hey Sebby,

While I too realize this isnt a figment of my imagination...I also know that this condition impacts ones psyche tremendously...so I will be seeking counseling shortly...
I need to talk to someone face-to-face about this...just to unload and get feedback.

Take care everyone,

noni
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Re: Its not all in your head!!!

Post  Sebby (Admin) on Sat Apr 02, 2011 4:10 pm


Yes it most certainly does effect us psychologically. I too have counselling. The statement I am simply making is that the cause of V is not psychological. In other words, if you cheer up and chill out it wont just go away.

In too many areas of womens medicine in history dr's have told us that our minds that are to blame for this condition and that conditioin. They used to think the womb went walk abouts and floated all over womens bodies making them hysterical!



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Re: Its not all in your head!!!

Post  kukubadi1987 on Mon Oct 15, 2012 8:36 pm

hello girls, i am new to the forum (and to my new experience of valvodynia....). i had read many times about this book of dr Glazer "the vulvodynia survival guide"...do you suggest it for me to buy it?did it help you at all?

many thanks
katerina

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Re: Its not all in your head!!!

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