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» Vestibulectomy
Fri Aug 18, 2017 12:39 pm by Hopeitworks

» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 4

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering


I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 0

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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