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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 …

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Lost ALL hope

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Lost ALL hope

Post  peaceplease on Wed Jun 03, 2015 8:25 pm

I don't know where else to turn. I have NOBODY who can support me. My husband cowers away at my depression which comes out as anger. My vagina is on FIRE and has been for months. I have had this god awful condition since 2009, but since 2010 it just comes and goes. A few bad days here and there, never more than a week in a row with symptoms. Then things will quiet down. Without my doing anything specific… just on its own. So, it has been livable. But for whatever reason since mid April it has been non-stop. I am literally house bound. I can't barely walk. ALL I had going for me was the burning and pain would subside when I was laying down, but over the past 24-hours, that is no longer the case. ANYTHING I try makes things worse. I am done putting anything on my vagina. Even just touching it to look at it in a mirror causes intense pain afterwards. Pee causes pain. Discharge causes pain. Any contact causes pain. It is just in pain ALL the time.
I don't want to live anymore. This is NOT a way to live. WHY THIS part of my body? I don't know what my body is needing. I am at the end of my rope. I want to die, but I have two children who need me. I am so alone. Nobody understands and I don't bother telling them anymore as they fall short and it only makes me feel more alone and upset. I feel like I am on fire and swollen and aching and I don't want to go on another second like this. I started Lyrica last night as I was on it in 2009 for a year. I don't recall how much it helped, but I felt I needed to try something oral. I have felt SO much worse since I started taking it. Now I even have pain laying down.
Anyway I don't know how many people are even on this forum. Right now I feel like I am the ONLY person living like this. I feel like a freak of nature. There are no other support groups online that I can find, but I don't know how active this one is. I also have interstitial cystitis, but that has been not too awful since the vulvar pain flared up in April. I seriously have so much sadness and anger and pain in my body, I cry and cry and I don't feel I have any capacity left to cope!

peaceplease

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Re: Lost ALL hope

Post  sgw11 on Thu Jun 04, 2015 2:19 am

Hi peaceplease,

you are not alone! I know there a times when you feel so hopeless and helpless, but you can't let this bloody vulvodynia get the best of you. You are bigger and better than it, and we will not be defined by this stupid condition! Each of us is going through the same things, just at different levels. If things have been better before, hold on to that and know that it can get back to that. Our bodies are amazing. We will find a way to deal with it and cope. What other medications have you tried? Is yours provoked or unprovoked? I know how frustrating it can be trying to describe or even complain about this condition to other people. They just don't get it or realize how lucky they are! We are all here to support each other. You will never EVER be alone in this. Your husband and your wonderful kids need you. Don't let this bring you down! You can do it.

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Re: Lost ALL hope

Post  mrs.optimistic on Thu Jun 04, 2015 9:53 am

Peaceplease, (love that by the way).
You aren't alone. In fact, I feel the exact same way you do 95% of the time. Just today I spent a minority of my time in bed with ice packs and heating pads between my legs. I'm on my period and i feel like I'm being put through hell and back again. I also have two children, and if it weren't for them I'd be dead right now too. The pain is unreal- it does feel like no one cares. My fiancee has also been ignoring my cries- what else is there to do? He's sick of it. He won't have sex with me anymore because I end up in tears every time. I'm scared it will tear us apart! I barley joined this site a few weeks ago, and ive posted a few times and got maybe only one response if that. I haven't been on in days and wasn't sure if I should even bother.. But I'm so happy I did because I got to read this post! I'll tell you a little about me. I'm 21 with vulvar vestibulitis and pelvic floor syndrome. I was diagnosis 2.5 months ago and I've had this condition for almost 4 years. Its usually on and off, I used to have enjoyable sex and an orgasm maybe once in awhile.. But the past few months have gotten worst and I can't find anything to make things better. I have 3 year old twins, and I suffer from chronic depression. I blame this condition, along with some other medical problems caused by pregnancy. I feel like my body is ruined and I've lost a sense of who I really am. This condition messes with your mind! I know this might sound weird, but if you're okay with it I'd like to give you my number? Just to text when you feel like ripping your hair out. Maybe you could let me know how things are going, and we could help each other with new tips or ideas. Anything to keep each other a little sane for the time being.. Hope you're okay xo

mrs.optimistic

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Re: Lost ALL hope

Post  mrs.optimistic on Thu Jun 04, 2015 9:57 am

* I meant to say majority or my time, not minority lol

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Re: Lost ALL hope

Post  peaceplease on Thu Jun 04, 2015 4:02 pm

Thank you for the replies. I was in too much pain to respond last night. Just sobbing and sobbing due the the fact that I feel my vagina is literally being burned away into the deepest layers of flesh. Last night I also noticed I have a lump which is very tended and painful in my left labia. Between the big and smaller lips. Maybe a lymph node from all the inflammation? I am seeing a obgyn today. Mine retired so this is a new one. I have little to no hope she can help me at all. Other than trying to give me steroid cream or estrogen creams both of which I have tried years ago and just burned.
I don't know what is happening to my body. Hormonal issues. Neurological. Ph/acidity. I just feel totally overwhelmed and terrified. My kids are greatly impacted by all of this.
Mrs. Optimistic. I am 48. I am so sorry you are going through this. Maybe we can private message? Not sure now to do that on here. I will try to. Thank you for trying to give me some hope or for trying to let me know I am not alone. It's like I am so depressed and in so much intense pain I can't really even take it in. I feel like a wounded animal that just wants to crawl off alone and die. It's going to be another day of hell and the obgyn appt won't help with all the touching down there.

peaceplease

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Re: Lost ALL hope

Post  naomi on Fri Jun 05, 2015 10:10 pm

So sorry for the lack of response on here. It used to be a really active site, I guess people just plod on, trying to cope with pain and everyday living. Or women have been treated and cured and don't post anymore.

I tend to chat to fellow suffers on Facebook and the secret group, as I find coming on here just too much most of the time. I guess it's a classic 'ostrich head in the sand' reaction!!

Have you been tested for food intolerances etc? I had a NES Scan the other month and it told me exactly what I'm deficient in (vitamin b complex etc etc) and gluten and lactose intolerant. Already my skin rashes on my torso and face have nearly gone (had since I was a teenager!). So god knows if it's linked to my vulvodynia, but I'm bloody giving it a good go!!!

I'm also ditching sugar, trying to be calmer with YouTube mindfulness meditation videos (I'm v v highly strung) and now this week started drinking that forever living aloe Vera gel.

I'm just desperate for the chance for my body to heal. I've not had pain free sex ever. It's been impossible since I was 24 and now nearly 10 years later I'm married to a fab guy, never had sex with him and I'd love the privilege of starting our own family...but it all just seems like a far away dream, and only something that other lucky people have. Mix that with a large dose of depression and anxiety
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Re: Lost ALL hope

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