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» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

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: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

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: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


Looking for Someone to Listen

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Looking for Someone to Listen

Post  Trying on Mon Aug 08, 2011 6:27 am

Hello everyone,

I've been searching online for some sort of vulval pain support group since I don't have any friends or family who want to talk with me about my vulvodynia, which is what the doctors have said I have. It's getting to be too much to handle on my own, and my ex-boyfriend of 3 years did not know what to do to help me either. I feel very alone and hopeless.

Since I first had my period when I was 14, I cried whenever I tried to put in a tampon. My sister/mother laughed at me, saying I must just "have the wrong hole". Ashamed and embarrased, I have avoided using tampons unless absolutely necessary, and have never once had a pain-free tampon insertion. However, I don't have any pain unless a specific area is touched, so I suppose I'm lucky compared to some women who have pain all the time. (Although "lucky" is a relative term.) Razz

10 years later, I saw numerous doctors after trying to have sex multiple times, with it ending quickly with nothing but pain and tears. A geneicologist finally told me I have vulvodynia, and for 2 years now I have tried numbing creams, antidepressants, acupuncture, and physical therapy, but to no avail. All methods seem to relieve about maybe 10-20% of the pain only, which is on a scale of about 8/10. This means I still can't have sex - all I feel is pain, no pleasure at all. My ex-boyfriend, who wanted a sexual side to our relationship, couldn't understand my problem. He tried to be very gentle and caring, but I just had no desire whatsoever, because everything ended in pain for me. We tried seeing a counsellor and trying alternative ways to be intimate, but in the end he needed my vagina to be a part of things or it just wasn't good enough. I never really had much of a sex drive before this, but now I dread the thought of anything and feel resentment and anger.

So after 3 years, I have broken up with him because I just can't take the torture anymore - trying to please him while not wanting anything and feeling constantly pressured to try again - because "this time it might be good". He's asked how he can help, and I don't know. Not having a sexual relationship doesn't seem like something any guy would agree to. All I know is that I feel extremely alone and hurt.

To add to this physical problem, it also doesn't help that at about the age of 16 I learned that my father is addicted to pornography, and my parents divorced. We had been a very loving, happy family before this - but afterwards it ended in ugly arguments and a broken home. My poor mother just couldn't take my father's lies and false promises anymore. That shattered my once-good relationship with my father, who chose pornography over his family. Since then, I have had a strong distrust of men as being controlled by their physical desires. Although this distrust started after my original discovery that I could not insert a tampon, I'm sure this mental issue doesn't help my physical one. Although it's definitely hard - sometimes I wonder if it's just all in my head, that I'm mad at men and I've done this to myself with my negative thinking. My boyfriend has told me to just relax more and maybe it'd be fine. It's heartbreaking. I hope it's not just in my head, but who knows.

So, this is where I am: feeling alone and depressed and like a complete freak. Breaking up with the man I love because I can't take the pain and guilt and anger and resentment and arguing anymore. No one seems to understand how I feel or what I'm going through.
I guess I hope by posting on this site I can finally find someone who can understand what I'm going through. Even if there's no advice, it'd be nice to know I'm not alone in my suffering.

Thanks for listening,
Trying


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Re: Looking for Someone to Listen

Post  Sarah001 on Mon Aug 08, 2011 12:08 pm

Hi and welcome. I think you should read a copy of "When Sex Hurts" which lists all the reasons for vulvar pain. As yours started from first tampon use it sounds like you might have a genetic overgrowth of nerve endings in the area which I believe they would use lidocaine on plus dilator work to get used to penetration slowly and of course pelvic floor therapy if those muscles are tight. It's a very good book that removes the mystery behind the useless non-diagnosis of "vulvodynia". Have you tried lidocaine at all? Also not all physiotherapy is created equal so it may be you didn't get to do the things you needed before, it really depends what your PT involved. There could well be a psychological element not just because of your recent family issues but also because your sister and mother laughed at your inability to use tampons so there could be some tensing up involved because of how worried you were about it with no input from family. I would start with that book though and see if there are treatments listed in there you haven't tried and go from there.
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Re: Looking for Someone to Listen

Post  Mouse on Tue Aug 09, 2011 10:31 am

Hi and welcome. How very brave telling your amazing story. I'm really sorry you have had so much pain and incredibly sad that your relationship ended.

It sounds like you have been searching for answers without a lot of support. When you say you have had counselling, do you have a supportive relationship now? For a lot of us that's the one relationship that helps the most. Have you been completely honest with your Mother and sister? This is a really difficult condition to cope with alone maybe you could try to gather some support from your family. There's a lot of information on vulvodynia available now maybe you could offer them some research to read. Do any of your friends know? Could your ex become a friend or is that too hard?

Unfortunately there are a lot of women on this site around your age who they are facing the same issues. Between us we've tried most things and we've got a lot of advice. I think Sarah's suggestion is great, reading and researching is a great place to start. I'm fairly big on lifestyle changes. Taking good care of yourself, making dietary changes (yes I mean sugar), exercise (if you can), face time with favourite people, good sleep, time in the sun, meditation, a supportive relationship with a therapist - anything really that nurtures you.

Good luck Very Happy




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Re: Looking for Someone to Listen

Post  Trying on Mon Sep 05, 2011 7:52 am

Thanks for the advice ladies.
I picked up a copy of "When Sex Hurts" and it is indeed an info-packed and very new, up-to-date book. I'm still reading through it, but it's nice to know that at least some doctors care about this issue and are working towards researching and understanding it more!

I've also made an appointment to talk with a sex therapist. There's only one licensed practicioner in my city, and it costs a whopping $170/hour! Even with my health insurance, I'll still be paying $120/hour, ouch. I'm still paying off student loans and don't have a lot of money, so it's pricey. I know it's important and health is worth the time and effort, but still.... Sad

Anyhow, hopefully the psychologist I see in a few weeks has some new input and ideas for me to try. I might also try some physiotherapy with a centre that's supposed to be familiar with vulvodynia. But again, the issue of location and cost make it difficult to squeeze into a busy/low-income schedule. I guess I just have to try and be positive and hope that there are small investments into becoming healthier.

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Re: Looking for Someone to Listen

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