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» What's next?
Fri Apr 20, 2018 10:07 am by amyhp

» HELP!! Topical cream?
Mon Apr 16, 2018 5:49 pm by Sad

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

» Pressure to have sex.
Sun Apr 15, 2018 2:00 am by Sad

» Vulvodynia and other neurological diseases?
Sat Apr 14, 2018 8:00 pm by wuhujen

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Sat Apr 14, 2018 7:57 pm by wuhujen

» I wanted to share a resource that has made a huge difference for me
Wed Apr 11, 2018 9:28 pm by amf329

» Loneliness
Wed Apr 11, 2018 11:36 am by sophiarp

» I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone
Fri Apr 06, 2018 4:06 am by Warrior2010

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: 4

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: 3

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

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

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: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

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: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


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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