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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 …

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Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

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Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

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: 4

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: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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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 …

Comments: 5


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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