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» I don't know what to do anymore
Today at 5:05 am by SinclairSassy

» Social Security Disability Benefits
Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 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

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.

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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 …

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

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

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

Hello!

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 …

Comments: 0

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


Don't know what to do.

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Don't know what to do.

Post  SO FUSTRATED on Wed Nov 02, 2011 8:40 pm

Hi,
This is my story.
I am 25 years old and never had pain free sex. The first time I tried at the age of 17 I knew something was not right. That relationship ended shortly after because he went to college. I was not in a relationship until I turned 20 and I was totally fine with that because I thought it was easier. I started to date a kid that I had known for years. I was very straight forward with him about my "issues with sex" and he was fine with it because "we are so great together". We get along great, enjoy a lot of the same stuff (camping, fishing, hunting etc...) We have been together 5years now and have tried everything you can think of (positions, numbing cream etc...) It took me a number of Dr.s before I found one that would actually listen to me about my pain. She sent me to a specialist that finally had a clue. Now I just started seeing a pelvic floor therapist who is great. I think that the birth control had a horrible effect on me that I didn't even relize till I got off it. ( was taking for bad periods) Now here is the worst part. I have always had this huge guilt that we don't have sex and feel like such a failure as a women. I should have tried harder over the 5 years but it was fustrating and discouraging and every Dr. just made me feel like I was crazy so I just gave up. We have always had fun doing plenty of other things. I know that my boyfriend would have asked me to marry him if he thought that I could give him a child. (I know that this is a big fear of his and mine) I recently found text messages from him to another girl. He swears nothing happened (it was suppose to happen that weekend) and that he doesn't think that he could have gone threw with it. I believe him I know that he loves me and truly believe that if we just had sex that this wouldn't have happened. Now I don't know how to get passed the hurt and trust him again. I want to so badly, just so sick of feeling like crap. I wanted to go talk to a therapist that is experienced in sexual problems but he wants nothing to do with it. (says he doesn't believe in them) If you love someone wouldn't you do try anything to make it work. Sorry its so long but thats my story

SO FUSTRATED

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Re: Don't know what to do.

Post  noni on Thu Nov 03, 2011 2:49 am

Hey--

First, it really breaks my heart to read about your struggles. Its not easy, this difficult road we are on. But its even harder when youre in a relationship. It complicates things.

I know its challenging getting good medical care. Im on Amitriptyline for the nerve damage. Its doing an OK job I guess, for others its a nightmare to be on.

Theres just so many layers to this disorder. Theres the physical, debilitating pain, but then theres also the emotional strain. Its hard to keep going, when doctors are telling you you're a nut. And on top of that, you gotta satisfy your man so he doesnt go astray. Lots of anxiety and depression, hopelessness.

Its gonna get better. We've all had those dark and isolating moments, when everything turns to shit and we wonder why the hell this is happening to us. Dammit, there are 15 year olds getting knocked up, and here I am wondering if I'll ever be able to conceive properly and carry a child for 9 months.

I could write a novel here. But I wont. I'll spare you my anguish and turmoil.

Just pray or meditate or laugh or read....sometimes when we focus our energies too much on this monster condition, it consumes us. I know I need a vag break. Im gonna take up a new hobby--cause obsessing over this is not going to better my situation.

I hope you have an understanding healthcare provider to atleast medically get you sound. I aslo hope you have a good emotional support system in place. Or maybe you're like me, I dont have one, so I come on here and the fb page and rant and pour out my worries to women who understand.

Girl, you aint alone in this.

You'll be in my thoughts love.

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thanks

Post  SO FUSTRATED on Fri Nov 04, 2011 2:00 pm

Hi Noni,
thanks for the reply I was very excited to see that somebody had something to say. It is nice to know that I am not the only one with this problem. I just want to have a normal relationship for once. It kills me when I see kids having babys or just how awfull some parents are.
Thanks Again,
So fustrated

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Re: Don't know what to do.

Post  SimplyBelle on Sat Nov 05, 2011 4:44 am

I believe him I know that he loves me and truly believe that if we just had sex that this wouldn't have happened. Now I don't know how to get passed the hurt and trust him again. I want to so badly, just so sick of feeling like crap. I wanted to go talk to a therapist that is experienced in sexual problems but he wants nothing to do with it. (says he doesn't believe in them) If you love someone wouldn't you do try anything to make it work.

My fiance and I are getting married in six months. It's been three months since we had one rare, rare, opportunity at pain free sex (everything before and after was painful). But, despite all the excitment of getting married, I sympathise with you. It's really really fustrating dealing with men who are at the height of their sexual curiousity... I'm just never in the mood, and if I do, my anxiety takes over. But he loves me, he's still going to marry me, you just have to have lots of communication and he has to be willing to make it work. There's only so much you can do --- sometimes compromising/coming to a solution isn't about meeting in the middle but meeting at the best solution that is best for the overall health of you.

You should just go to the therapist by yourself. It will help. Maybe, if he sees you changing your attitudes and behaviours he'll jump on board too.

I hate seeing kids having baby --- its worse when you fear that you might never have that opportunity to have that 'accident'. What I hate even more is when you're out with the girls and they start talking about sex, and all the great sex they have, and all the awesomeness, and the fun, and... you just dont have anything to say, because it just sucks.

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My Relationship

Post  AroraNightfire on Fri Jan 20, 2012 6:18 am

I understand your feelings when it comes to sex. I dont enjoy being penetrated by a penis. Ive been in a relationship for the past 5 yrs. Im living with him the past 3yrs. He understands my pain and doesnt want to make it worst. Sometimes when Im horney and I ask him to penetrate me he says its not a good idea because I'll hurt. He often asks me to give him a hand job. He's happy with that. I wouldnt be with a man who NEEDS sex from me. I feel if a man NEEDS and still asks for sex from me KNOWING I hurt during sex and HURT A LOT after for DAYS....HE'S A LOOSER and he's selfish. When two people truely love each other they find a way.

Yes I also understand how it feels when your listening to other girls talk about how much they love sex, and how their boyfriends do this and that great. It makes me miserable to listen to it...and I just walk away.
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Re: Don't know what to do.

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