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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 anyone had a biopsy?

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    Has anyone had a biopsy?

    Post  Help!!! on Sun Apr 26, 2015 5:43 pm

    Hello,

    I am new to this website and thankful that I have found it. I am 26 and been suffering with vulvar pain for a year and a half how. I gave tried several things and spent a fortune in lotions and potions and pills to try. I am on amatrictilyine at the minute and some days I don't really feel it. However after sex, exercise or any stress at work then it is very painful and lasts about a week. Without the tablets I am in pain all the time. My dermatologist now thinks we should biopsy the area and investigate. It is on my left labia and i am a bit concerned as what I have read about it sounds very painful. I wondered if anyone else had a biopsy done? My pain is in a small specific area sp hoping they will be successful in removing some of the damaged tissue.

    Thanks x

    Help!!!

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    Re: Has anyone had a biopsy?

    Post  x_chelss@live.com on Sun Apr 26, 2015 10:12 pm

    Hiya. I'm sorry to hear that you are suffering but I'm glad you have found this forum. I've had 5 biopsys taken. 4 around the outside of my vagina, 2 either side of the clit, and then another 2 lower down and then one inside.
    They numb the area and I actually found relief for a small while whilst I had the anaesthetic down in that area. My biopsy found irritation, and imflamation. But they were actually testing for vulvar cancer!

    I hope your biopsy goes well it's nothing to fear!

    x_chelss@live.com

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    Re: Has anyone had a biopsy?

    Post  mikan92 on Mon Apr 27, 2015 3:30 am

    Hi,

    My gynae also told me that if my condition does not show improvement (via natural recovery) in a month's time he will do a biopsy. So I'm also wondering what the biopsy is for, because I seriously do not think that my pain is associated with cancer (it is probably triggered by something!). I am really scared that the operation will make my vulvar more inflamed/worse.

    HElP! how did your vulvar pain start?
    I have pain on my labia too, especially the deepest fold that connects with vestibule. I am confused because I have pain on my vulvar too, but all these are only provoked with pressure and friction. Does this sound like vulvodynia or what?

    mikan92

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    Re: Has anyone had a biopsy?

    Post  x_chelss@live.com on Mon Apr 27, 2015 11:45 am

    Yeah it sounds like vulvodynia. I had the exact same pain your describing, I had the surgery in January and I no longer experience any pain really. I still get the odd sensation off burning but nothing major! I had half off my labia removed because I had pain in the fold as well, my vagina appearance does look different but I'd say it looks better in all honesty.

    My pain started 3 years ago in July, and having the operation was the best thing I'd ever done. My daily life is so much better since.
    I think the trigger for me was rough sex, my parents were away on holiday and my
    Boyfriend was staying with me whilst they were away, we had sex A LOT and over the week it got unbearable! I thought I had thrush but it just got so much worse and the doctors wasn't exactly helpful. Where are you from?

    They test you for everything when having a biopsy, because vulva cancer causes painful intercourse and more symptoms like vulvodynia but my skin around the vestibule changed colour so that's why I had mine tested.

    x_chelss@live.com

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    Re: Has anyone had a biopsy?

    Post  mikan92 on Mon Apr 27, 2015 1:04 pm

    I'm glad that the operation worked for you! It's hard to have a normal life like everyone else with this pain down there Sad

    For your case did the Drs identify a cause to your symptoms? I mean rough sex might have damaged your vulvar tissues, so does that mean the nerves are irritated?
    I really don't like that they just label this condition with something "dynia", I believe there is a cause to all the pain we are experiencing and I think identifying the cause is key to effective treatments. I am living in Australia atm but am not a citizen so doesn't have medicare. It's so expensive & troublesome to see a specialist here (I need referral from all the incompetent GPs who think they know what they are doing but are just slowing down the process of me being diagnosed)!

    I remember telling the gynae how I think the tissue skill looked red after the potent steroid ointment application and he said it looks normal to him (under a high magnifying microscope), not inflamed, not dry. That's why I find it odd that he still wants to do a biopsy. Maybe I'll seek a second opinion from a vulvar specialist instead.

    mikan92

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    Re: Has anyone had a biopsy?

    Post  MensRea on Tue Apr 28, 2015 4:54 pm

    I had biopsy! It wasn't bad experience at all. The biopsy of course showed inflammatory change thus vestibulodynia, which was something i knew from the beginning, but at least it ruled out other diseases.

    MensRea

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    Your case sounds just like mine.

    Post  sweetstarfire on Fri Jul 03, 2015 4:22 pm

    I am 26 as well. I have been dealing with this for 15 months. My dermatologist just did a biopsy last week and he found that my nerves were inlarged. That is when he gave me the diagnosis. It has been a rough road but I am glad I finally have a name for what I have been going through. My pain is always worse in the evenings after a day of moving around. Sex can make it worse. The biopsy wasn't as bad as I thought and it did give me information about my case. I was numb for the biopsy. I felt a little pinch for the numbing and that was it. I was uncomfortable for about a day and a half after the numbing wore off. But could start having sex about two days later. So it didn't really interfere with my day to day.
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    Re: Has anyone had a biopsy?

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