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» Finally found a place for me...
Today at 4:08 am by mtsp

» UK Vulvodynia Clinics
Yesterday at 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

» There is hope after all!!
Wed May 16, 2018 2:50 am by Cbrimer28

» Getting to the point of wanting to End Everything ADVICE NEEDED
Mon May 14, 2018 6:49 pm by fairlight10

» Looking for advice!
Thu May 10, 2018 8:50 pm by KB365

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

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


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: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Roller coaster ride/burning pain/arguments with hubby

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Roller coaster ride/burning pain/arguments with hubby

Post  BpCookie on Tue Mar 06, 2012 9:53 pm

Hello Ladies, Ive read many of your threads, many of your stories and most of them absolutely terrify me. To read that many of you have had this for YEARS is a very scarey thought. Ive had this for a year. It started out as a slight burning and has increasingly gotten worse. Ive tried all kinds of meds, creams, ointments.....etc but nothing helps. I cant even imagine suffering with this for as many years as some of you ladies have. I feel for each an every one of you. Ive only had this for a year and there are times when I wish I were dead. Then there are times when I will wake up in the morning and wonder "Why should I even get out of bed? What do I have to look forward to? Nothing but pain".

Im peri-menopausal too, so the Lichen Simplex Chronicus Vulva pain and the hormone changes have turned me into a completely different person. I go through depression, I go through anger, I go through jealousy, my emotions are a complete wreck. I can seldom have sex with my husband, its just far too painful and when I do, I end up paying for it for days after. Some days I have to spend laying down in my bedroom because it hurts too much to sit. Ive given up trying to go on vacation, going out to eat, going to a theater etc, things that me and hubby used to love to do together. We have been married for 13 yrs and during those 13 yrs we seldom got into an argument but now we argue more. Its my fault too. We have disagreements because Ive become very sensitive. My husband will say something to me about my LSC and I will assume he doesnt understand, doesnt want to hear about it, doesnt care, doesnt want to be around somebody like me who is ssssoooo miserable and sometimes he will say "you just have to be patient". I get pissed off about that remark because I think a year of pain from this is about as patient as I can be. Then there are those times when I get suspicious and think he is having an affair. Hell, he cant have sex with his own wife and Im not even the person that I used to be a year ago, before all of this started. Im just so afraid that the lack of sex will eventually lead to him finding someone who can give him sex. Im afraid of everything now.

Sometimes I try to hide my depression from my husband because I dont want to ruin his mood. I will just go off into another room and cry. Once I even hid in the closet. *rolling eyes*. Sometimes I just feel so alone.

I feel so worthless as a woman and worthless as a human. I feel more worthless as a wife.

I dont know how some of you ladies have been able to live with this for so many years. I cant imagine. I hope that each and every one of you will find pain relief very very soon. Hugs to you all

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Re: Roller coaster ride/burning pain/arguments with hubby

Post  JemimaSurrender on Wed Mar 07, 2012 11:22 am

BpCookie wrote:Then there are those times when I get suspicious and think he is having an affair. Hell, he cant have sex with his own wife and Im not even the person that I used to be a year ago, before all of this started. Im just so afraid that the lack of sex will eventually lead to him finding someone who can give him sex. Im afraid of everything now.
I've had the same thoughts on and off now for God knows how long... Some days I'm fine, others I cry my eyes out because I think he'll run off with someone else. I even know that that will never be the case. He's not a liar, he's a good man, a real gentleman and a very private one too, so when he tells me he won't run off with someone else over the fact he can't have sex, I believe him wholeheartedly. But it doesn't stop the worry...

As awful as this sounds, I've even (jokingly) suggested he go off with a prostitute. It's come up several times, whilst we're laughing about it, but he doesn't know that deep down I feel that if this carries on any longer it may be a real option. What am I saying? No it's not. What I really mean is... If this carries on for any longer (it's already been over 3 years) I'll end up ending the relationship because I can't bare knowing I'm the one that has brought this into the relationship, and it's hurting him.

I never want that to happen. We've been together about 4 and a half years now and I want to spend the rest of my life with him, but some days that's all you can think. Then it goes on to... "Maybe he can go off with someone else for a night, get it out of his system, then we can carry on as normal" but I know that could never happen.

Has anyone else thought like that? That they should let their other half go off and do what they have to do? I think about it a lot, but I know that even if I told him to seriously, he would never do it. Have any of you actually said that to your other half? Or has it happened??

I'm just curious. I think it's a side of this that I've not seen mentioned too much here yet...

Sorry Cookie! I've hijacked...

I'm really sorry that you're going through so much pain, mentally and physically. If you'd have seen me 12 months ago, I was the same, it was horrific. I wanted to die. I wanted to cut my vagina off so it wasn't an issue anymore. All I can say is... It honestly gets better.

Physically, I don't think I'm any better. The condition is still there, with no alteration, but I think time does wonders sometimes for your mental health. Yes, going through this for longer hurts you like hell, but I think after the first year or so you kind of come to terms with it and know that there's nothing you can do but hope to get better soon.

I'm so much more stable lately than I was back then. Don't get me wrong. I still have days where I hide in the bathroom and cry my eyes out, but they're less frequent. It sounds bad, and I don't wish you to have this condition a day longer than you already have, but it does get easier to deal with. At least I think so.

I hope you feel better soon lovely. And I'm sure you and your husband will just get stronger through this. I'd put it down to a rough patch, and try and stay positive.

Sending you a biiiig squeeeeze...



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Re: Roller coaster ride/burning pain/arguments with hubby

Post  BpCookie on Wed Mar 07, 2012 4:27 pm

Jemima Hun, You didnt hijack this post at all, I wanted to hear how others were handling all of this. At least I know that Im not the only one.

Ive been feeling kinda down about my body and my looks. I swear I have aged 10 years in the last 2 yrs. Bags under my eyes, saggy every where, thinning hair, uuuuggggghhh. I had a good 10 yrs of my life where I actually liked how I looked. I would wear all those cute little nighties and surprise my hubby. We did all kinds of fun stuff together and then I turned 45 and started to look like The Bride From Hell!!!! Now Im 47 and not only do I look horrible, Im moody, depressed, cant do the things that we used to do as a couple and I cant even have a normal sex life with my husband.

You should have seen me about 6 months ago. I was crazy with suspicion. Everything my hubby did made me think he was seeing someone else. If he was late getting home from work, if he got his gas at a different gas station, if he went to Home Depot on the weekend........etc. It got to the point that I was checking his shirts for hair or perfume and the worst thing of all, I checked his undies. Just terrible. Im just terrified that he will leave me or cheat on me. Im just not the person that he married 13 yrs ago. I am nothing but a mess.

You sound so much like myself. There have been times where I wanted to take a knife to my vulva and just cut it all out. I figured if I did that, then the Dr.s would be FORCED to fix it some how. My Gyno is so confused, she cant figure out why I am not responding to ANY of the meds that she has tried. Ive asked about the injections and she told me that she wouldnt know where to put the injections since I hurt in such a wide area. Ya know, she can put on a blind fold and just throw it at my vulva like its a dart. I sometimes want to scream "I DONT GIVE A SH WHAT YOU DO, JUST FIX IT!!!! Dont get me wrong, my Gyno is so very nice and her nurse is wonderful but Im just so frustrated. The nurse told me "dont worry, soon you will be doing all the things you used to". I want to believe that, but I know its not true.

Ya know, Ive been Bipolar for 14 yrs and during about the first 6 yrs of that, I put my poor hubby through Hell. I was unstable, wanted to die, trips to the emergency room. Then peri menopause came and I became an emotional mess again. On top of that, this friggin Lichen Simplex came into my life and once again Im puting my poor hubby through Hell.

I feel so so so bad for anyone who suffers from this. Im so very sorry that you still have crying jags. It breaks my heart to think of anyone crying and bawling there eyes out because of this. I just want to reach out and comfort anyone who is depressed.

Ive been a member of an online Bipolar Support Group for over 4 yrs and Im used to giving ppl support, making them feel better and also making them laugh. But this last 6 months I havent been much help on the Bipolar Support Board. I feel so useless anymore.

May I ask a few questions? What state do you live in? How old are you? I just like to know a bit more about ppl on this site.

Take care hun. hugs to you


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Re: Roller coaster ride/burning pain/arguments with hubby

Post  JemimaSurrender on Thu Mar 08, 2012 2:39 pm

I reckon worrying about your looks more is just a standard side effect of all this y'know, because I'm exactly the same!

I look back at old photos of me (well, from when I was 17/18) and I just think how much nicer I was back then, even though I know it's probably not the case. Hell, I worry about the fact that my bum is sagging and going flat, I'm getting cellulite, I've got massive creases and dark circles around my eyes. And I know if anyone actually saw me in the street they'd think I was a mentalist because I'm a size 8, 7 stone young girl, but that's just the world we live in with this condition. It drives you mad!

If you're not giving your partner sex it's only natural that you think his eye wanders, if only looking at girls passing in the street, and as a result, you panic about if you match up to everyone else. I'd also like to point out that I am 22 and my boyfriend is 37, which kinda makes my worries sound even crazier!

I guess what I'm trying to say is... We all need to stop worrying so much!!! This thing takes such a massive part of us away and some days I just think, y'know what, I just can't let it take any more! We've all got to love ourselves more than ever, otherwise it'll eat you alive.

It really breaks my heart to think how many other people feel the way I do, and cry themselves to sleep, wanting to rip themselves open, and that's not okay. Feeling good about yourself has just got to be a must to get through this.

Cookie... We should think ourselves lucky! Yeah, it's painful to know you're going through this with a partner that you feel like you can't keep happy, but really... You've got a guy that, despite the fact you can't be intimate with him, is sticking by you through it all. Jeez, that takes a special kinda guy, but more importantly... That must mean he thinks you're a pretty fantastic lady and one that he wants to hang on to!

I feel like I'm preaching now...! I'll be back here in a week on the verge of a meltdown no doubt, haha.

Keep your chin up Lovely : )


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