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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 …

    Comments: 3

    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 …

    Comments: 5

    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 …

    Comments: 1

    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


    Has any one seen a neurologist ?

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    Has any one seen a neurologist ?

    Post  zarli on Mon Nov 18, 2013 11:56 am

    Hi Girls just wondering if any one has seen a neurologist about nerve pain ?

    zarli

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    Nope

    Post  21andcounting on Sat Dec 14, 2013 5:47 am

    Never gone to see one BUT my mom is a neurologist and she has been involved throughout my treatments. She didn't really bring any novel information to the table, even though she is a neurologist. She had some insight about certain drugs I tried, but no specialized knowledge besides that. This being said, she is just one neurologist and there may be others that specialize in nerve pain.

    21andcounting

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    Re: Has any one seen a neurologist ?

    Post  zarli on Sat Dec 14, 2013 9:12 am

    Thank you, I was disappointed to hear that but I guessed as much. I'll keep searching ......

    zarli

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    Re: Has any one seen a neurologist ?

    Post  21andcounting on Sat Dec 14, 2013 4:27 pm

    Just curious, which types of specialists (if any) have you already tried?

    21andcounting

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    Re: Has any one seen a neurologist ?

    Post  zarli on Sat Dec 14, 2013 9:54 pm

    Thank you
    -3 vulva pain specialist
    -dermatologist
    -2 physios
    -2 pain specialist
    -1 gyno

    I also suffer from fibromyalgia, which came after vulvodynia. I have had MS ruled out. I don't know who to try next, I have a sneaky suspicion I will be putting up with this condition for the rest of my life. I go to the best Vulva specialist in Melbourne and am seeing her in March which we will be trying a nerve block, although I have read lots of negative results and also its just a cover up of the condition any way, I want it gone but I really think Vulvodynia is a condition all on its own and we may have to wait until they research it more to find a cure.
    Sorry I rambled on......

    zarli

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    Re: Has any one seen a neurologist ?

    Post  Alana3 on Sat Dec 14, 2013 11:30 pm

    All vulvodynia means is "painful vulva". Unfortunately everyone's condition isn't the same and there are many reasons why your vulva could hurt.

    Alana3

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    Re: Has any one seen a neurologist ?

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