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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 …

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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


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 …

Comments: 0

Sex off the table?

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Sex off the table?

Post  JstMrried on Sun Jan 25, 2015 8:16 am

Ive finally nailed it on the head with how it makes me feel. I know i've tried to explain before, but this is it. So I'm going to type it exactly how I wrote it, it may seem like I'm talking to someone else, that's just how I write.

The real deal is, is that it's been since May; 7 months and our sex life is shit. I am broken, vulvodynia. I feel hopeless and the doctors I no longer truly trust. I'd go to the specialist and they'd say, "here lets try this medicine, and come back in a month for a check up." And that'd go on and on for months/years with no solution, just constant follow up appointments, no real solution. I've been reading support group stories, all talking about how they've seen doctors for 3+ years. Specialists, chiropractors, yoga workouts, different diets, different vitamins, etc. I just want to talk to someone who doesn't say that we should take sex off the table. You know what that does to newlyweds, let alone a couple?

Resentment: from him, thinking I don't find him sexy anymore, like I don't want him. He feels completely unwanted. He feels guilty for wanting me that way. He tries to keep it under control, cold showers and masturbation. Then he asks me for his weekly blow job that I promised I'd do every week since summer.
Resentment: from me. I get nothing...constantly a job. Something about the wetness and worry/nervousness of "going down on me" turns me away from even that. So back to the blow job, picture this...I get in bed after a hot shower. I rubbed my nipples in the shower with soapy suds and closed my eyes. I'm imagining his strong hands electrifying in that satisfying way. But when I crawl into bed I'm sexually frustrated from being turned on, but knowing I'm broken. So I curl up onto my side and pull into the tightest ball that I hope will consume my feelings in the core of my stomach and I hold it there hoping they just swallow up and go away. I've started associating my craving for him with pain; pain down there like a knife and pain in the pit of my stomach from a burning hope that maybe it won't hurt anymore...but it always does. Once I'm in bed he wraps an arm around my stomach and pulls me into the small spoon. Immediately I feel his boner on my backside, and he tightens his grip to arch my back slightly and angle my butt to cradle his hard penis. I know what he wants and I don't blame him because it's been at least 7 whole days. He resists as long as he can. And in my head I know I can't sleep yet, I know that I have to slide over between his legs and give him what I promised since I can't do much else. My craving for him dissipates as I swallow his whole penis to the best of my ability. And I feel like I'm performing a duty as a wife, that I owe him. I am debted to him because he didn't know he was marrying a defect. And I feel bad, sorry for him, and broken myself. I didn't know. And it's the brokeness that make me choke on my own silent tears as I finish him. It's not supposed to be like this; this is the best way I know how to explain. To put someone in my own body and situation, to feel what I feel; that's the only way I know how to explain the brokeness that comes with "taking sex off the table."
My husband is the most understanding and wonderful, not wanting to cause me pain, and yet I still feel this...how do people beat this?


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Re: Sex off the table?

Post  KatieMay on Tue Mar 17, 2015 4:28 pm

Hey Girl, I have just balled my eyes out reading your post because its how I have felt for so long. I have been in that exact same position so many times. That feeling of being 'broken', thats exactly what it is. I dont know if its like this for you but vulvodynia (which wasnt diagnosed for a LONG LONG time) has made me feel like less of a woman, less of a lover and less of a supportive partner but actually none of this is true and IT IS NOT YOUR FAULT, I hope you can remember that and that your partner clearly loves you and cares a lot about you.

I came on here today as I'm feeling incredibly low. I was diagnosed whilst in a relationship last year which has since ended and hadnt slept with anyone for 5 months until this weekend, it wasnt agony during, and stupidly I thought, hey, its getting better, it was only slightly painful then next day but now its excrutiating and I've been crying all day and unable to go out. I'm trying to give you support by saying I'm sure things will improve but right now I'm in the same place wondering wether I'll truely ever be able to enjoy sex again. I'm a very sensual person, I love intimacy and sex and right now this condition literally feels like a death sentence.

I understand the resentment on both sides and the turmoil this causes in relationships, it affected both my last two long term relationships and no matter how supportive and patient my partners were being I just felt a terrible guilt for not ebing able to give myself fully to them but at the same time resentment toward them for even wanting it as I knew they could never ever truely understand how things felt for me. I have been seeing a therapist for the last 5 months and cannot tell you the difference it has made to my confidence levels and my ability to understand the psychological impact vulval pain has actually had on me.

Like I said I wish I could give you some advice or support other than to just say I've been through and am going through the same things myself but if you wanna talk some more about this, I'll be checking back in for sure, and am more than happy to chat if its in anyway helpful. I think it would be helpful for me!

Keep your chin up hun, I know its ups and downs, I hope today has been more up : ) x


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Thank You!

Post  JstMrried on Fri Mar 27, 2015 9:05 pm

I really appreciate you replying to me, made me cry. I might be struggling emotionally right now more then anything. Feeling alone even though my husband is so supportive.
I think he doesn't want me to feel like this is an all-consuming thing in my day-to-day activities, because he wants me to be happy and try to not focus on it. But I've got to tell you...it does affect me in my day-to-day. My confidence seems gone in my ability to feel sexy, because I feel like it's pointless and I don't want to be a "tease." And it takes the part of me that felt like a real woman.

I could go on and on about it, but I know that YOU know what I mean. And I just wanted to say thank you for replying.


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Re: Sex off the table?

Post  BpCookie on Wed Apr 01, 2015 3:11 pm

Hi hun, I too feel broken. Not being able to do my wifely duties (or so I call it). We have been married for over 15 yrs and all of this started over 3 yrs ago. I have Vulva Lichen Simplex Chronicus and have constant burning. Sometimes my entire labia minora and majora will burn and it will spread down to my buttocks to my inner thighs. Right now our sex life consists of handies (hand jobs) and boobies (press boobs together, oil em up and he can go to town on them). Every now and then we will have REAL sex but I will pay for it for 3 days. Lots and lots of burning. uuuggghhh. I really feel for my hubby.

Have you ever tried an ointment called Lidocaine %5 ointment? You rub it in and it numbs the skin. If I'm going to have sex I rub that in 15 mins before hand. Also, I use one of those plunger things that you get in those over the counter YI meds and I fill it full of lube and insert it into my vagina to make sure it is VERY slick. Sometimes it hurts to have sex and sometimes it doesn't but no matter what, I'm always in a great deal of pain for three days after.

I'm always afraid that he will get tired of not handies and will find another woman. I even go as far as checking his computer to make sure he isn't chatting to women and having cyber sex. Worry worry worry. Or maybe he will meet someone at work..............

I'm 50 yrs old, peri menopausal, my looks are going down hill, so much pain and so many pain meds can really be hard on a person. It shows in my face. Bipolar then chronic back pain and then a broken vagina.......so what other nasty little thing will Mother Nature give me.

Only thing I can do is make jokes about my broken vagina. When I see my gyno, I'm always joking about it. I guess its better then complaining about the pain.

I hope things get better for you, for all of us. If you haven't tried the ointment that I listed above, then it can't hurt to try it eh.


The Burning Bush

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Re: Sex off the table?

Post  mrs.optimistic on Fri May 15, 2015 3:53 am

It brought tears to my eyes to read that because I felt like you were me. Vulvodynia going on four years. I'm only 20. I'm so scared this will never go away.


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Re: Sex off the table?

Post  jjr23 on Wed Aug 24, 2016 4:30 pm

That message along with all of those replies brought tears to my eyes. I know that "broken" feeling all too well. I have my good days and I have my bad days. The bad days are really bad. I don't think anyone understands how this physical condition effects us emotionally. I'm new to this forum and I really love how supportive everyone is to each other. You guys have made things a lot easier. Just knowing that there's heaps of you out there experiencing and feeling similar stuff to me makes me feel less alone. Feel free to message me about anything


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I feel the same!

Post  StellaLuna on Thu Aug 25, 2016 10:15 am

I wanted to tell you that I feel the same way. I have vulvodynia for 2,5 years. My boyfriend have made a lot of patience but he is very sexual and he keeps brings the matter all the time. So I feel always inefficient. I manage to have sex 1-2 a month but I know that is not enough for him and every time I reject his proposal of having sex he feels dissapointed. All this is a lot of stress for me and stress is the worst thing for vulvodynia.

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Re: Sex off the table?

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