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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

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Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

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: 10

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0


What is Vulvodynia?

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What is Vulvodynia?

Post  Sebby (Admin) on Thu Dec 03, 2009 10:46 pm

Vulvodynia - the term means "pain in the vulva" and is a description of the syndrome and not a formal diagnosis. It consists of Chronic itching, burning, rawness, stinging...bascially pain that has lasted for at least 3 months. Many women see several doctors, have several tests, get told their vulva looks ok, or its all in their head before either finding a doctor who knows enough to provide a diagnosis or discover the term "Vulvodynia" by an internet search like I did because the doctor's have never heard of it!!!

What is the Vulva? - Ok I am not patronising you I promise, but it is easy to get confused with the terms 'Vulva' and 'Vagina'. The Vagina is the canal that extends from the opening up to the cervix. The 'Vulva' is the outer tissue including the vaginal opening, labia, clitoris,urethra and the mons pubis.

Categories of Vulvadynia - Dysesthetic Vulvodynia, this includes symptoms of burning, stinging, rawness etc that comes and goes without warning anywhere within the vulvar area and can occur without being touched.
- Vulvar vestibulitis - This pain is located only around the vulvar vestible which is the shiny mucous tissue around the vaginal opening, inside the lips of the vagina. This pain is made worse by touch, such as intercourse, prolonged sitting, tight clothing etc.

Taken from 'The Vulvodynia Survival Guide' Howard I Glazer & Gae Rodke - for more information on Dr Glazer see www.vulvodynia.com




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Re: What is Vulvodynia?

Post  lunadaisy on Tue Oct 29, 2013 9:53 pm

Thank you for the definition. It seems like such an odd thing to have. I think I have had it for a long time but have tried my best to ignore or dismiss it. However, it went from acute to chronic in the past year and it consumes me and my quality of life. I am glad to find this site as I am just now figuring out what is going on with me. Strange but I only learned about this condition just the other night from a late night tv commercial for some cream that helps vulva pain....and it described the symptoms I have been having to a tee! (who would think?) I have been complaining of these symptoms for over a year and yet no doctor I have seen has pin pointed it. I saw a urologist recently because I have uti symptoms with out having a uti infection. I have thought it was a yeast infection and would buy monostate and yet that did not help the itching and burning. Anyway, I am probably writing on the wrong page or post but I feel slightly relived just knowing that there is a name for what I have and it isn't all in my head. I will be reading other post and posting my condition. I do have graves and hyperthyroid and I was wondering if this condition could be exacerbated by autoimmune disorders. Does anyone else have Graves or a hyperthyroid condition that also has vulv?

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Re: What is Vulvodynia?

Post  Alana3 on Tue Oct 29, 2013 9:57 pm

Its considered.autoimmune I have endometriosis

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Re: What is Vulvodynia?

Post  KimiKat on Sun Apr 13, 2014 12:49 pm

I have celiac disease, which is also autoimmune.

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RE: What is Vulvodynia?

Post  OBRN2007sms on Wed Feb 11, 2015 7:59 pm

I was wondering the same thing; I have lupus anticoagulant, fibromyalgia and IBS.

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re autoimmune

Post  surprisemom44 on Mon Feb 20, 2017 8:45 am

Just saw this...I have inverse psoraisis and psoriatic arthritis, these are also autoimmune diseases. I also have IBS, polycycstic ovarian syndrome, type 2 diabetes, and Lyme disease. I have been tested for Lupus and told I do not have it, but I have many of the symptoms of it.

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Re: What is Vulvodynia?

Post  jungleclover on Wed Jul 19, 2017 10:42 pm

I don't have anything autoimmune and I have this. I possibly have a semen allergy or like a hypersensitivity to yeast. Also when I get yeast it just won't go away. Horrid stuff.

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Re: What is Vulvodynia?

Post  mary jane on Sat Jul 22, 2017 9:21 pm

I think vulvodynia is a symptom and not a condition. I think it's a symptom of central sensitization, which would explain why we get a million other pain issues like back pain, coccyx pain, TMJ, IBS, etc
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Re: What is Vulvodynia?

Post  Jenjen on Tue Oct 17, 2017 11:57 pm

Hello Ladies! Am currently experiencing relief for my diagnosed vulvodynia - using a product called Ichthammol Ointment it's a black goo called a "drawing salve". Got from Amazon...7 years of agony - raw itchy vagina and anus....also using Prebiotic vaginal suppositories....if you've suffered from vaginal strep, or weird yeast and have never recovered I would add this to your list of things to try - hope this helps....blessings...

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Re: What is Vulvodynia?

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