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» Dating with Vulvodynia and Vaginismus advice
Sun Mar 17, 2019 4:46 pm by Lemonade_lemons

» Lyrica has been classed as a Class C drug in UK
Mon Mar 11, 2019 9:20 pm by mary jane

» Long Time No Talk... What's been going on with my V pain the past few years...
Mon Mar 11, 2019 9:15 pm by mary jane

» An absolute success story- please read!
Fri Mar 08, 2019 10:57 pm by Persevere1990

» I'm sorry im rambling
Fri Mar 08, 2019 7:34 pm by scrumptuous

» New member need advice please
Fri Mar 08, 2019 7:11 pm by scrumptuous

» MonaLisa Touch
Fri Mar 08, 2019 4:46 pm by rl2091

» Diagnosed Recently
Thu Feb 14, 2019 6:35 pm by davesjen

» New and need advice and help
Wed Feb 13, 2019 12:42 pm by feeling desperate

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

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 …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3

New member desperate need of other vulvadynia sufferers

Fri Feb 08, 2019 6:55 pm by Tfc13

Hi there hope some1 reading this is going through the same shit as me!, I'm new to this so don't really know where to start , I'm Teresa , I've just been diagnosed with vestibular vulvadynia , after countless appointments with GPS being misdiagnosed, tested for god knows everything , eventually under my gynochologist ,who done all her necessary tests, I now have been given a diagnosis I'm in …

Comments: 5

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 7


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

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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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