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» Acupuncture advice please
Yesterday at 6:08 pm by fairlight10

» Please tell me this can get better
Yesterday at 2:10 am by anon99

» 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

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 …

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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


This consumes me.

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This consumes me.

Post  EviE°Bee on Mon Sep 30, 2013 3:39 am

I don't know where to start. Uhh... are there still active members in this forum? The latest topics were posted in 2012.

EviE°Bee

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Been there

Post  mushroomvisionlala on Mon Sep 30, 2013 3:40 am

How long?

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Suffered too

Post  mushroomvisionlala on Mon Sep 30, 2013 3:42 am

Im married, but I lost the best years of my life to this condition. Even tho Im healed now, I still carry the emotional scars.

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Re: This consumes me.

Post  EviE°Bee on Mon Sep 30, 2013 6:02 am

As of right now, vulvodynia consumes me. It's what i think about every waking moment. I'm glad I found this site and I pray I can find some solace. I would like to share my story but before I do, here are some important factors:
* Dx with PCOS in 2010 (I get small cysts on my ovaries which causes absent periods)
* I have county insurance. (AKA really bad, rude, horrible, non-caring insurance. I guess I can't complain. It's free, right?) <--- I can complain. O:-)

In 2008, I had gotten a big bad UTI that lasted 3 months. I took tons of meds, had gotten yeast infections from the meds, developed major anxiety and I now have a fear of UTI's. Whenever I get one, instant fight or flight response. Finally, after taking Macrobid, I was able to live a little but I have not felt "normal" since then. After the whopping UTI, I would feel a minor burning sensation on my vulva when I would do certain things, hot baths, sometimes when I would exercise, during sex, after sex, I figured thats just me, the UTI probably just messed me up a little, no big deal. I would get UTI's twice per year which isn't bad and I would get a period 2-3 times per year which was fine by me, I thought I was lucky. I was so wrong. A few years later out of the blue I got this horrible itch in my vagina, no discharge, but I automatically assumed it was from a yeast infection. I had gotten some vagisil and used it for a week, symptoms persisted and worsened. I went to the county urgent care to make sure it was a yeast infection before I bought any otc insert cream. Urgent care found no traces of yeast, checked me for std's and found nothing. I was healthy. Itch persisted and became worse. I scheduled appt with county womens clinic and was told earliest appt was 3 months away, Ugh!!, so I made an appt, I had no choice but to wait. During those 3 months I went to the ER and crossed my fingers they could possibly give me an answer. Np checked out my outer vagina and did not know what to make of it (did not check inside vagina) and they determined it was dermaitis, gave me topical steriods and sent me on my way. Steroids helped for a few days then symptoms became even worse. At this point, im desperate, I need help. I continued steroids and finally my gyno appt came. I told him i initially thought it was a yeast infection and told him about my trip to the ER and current symptoms. He inserted speculum and quickly removed it and said i did not have a yeast infection. He came to the conclusion that I had uncontrollable itching due to being over weight. (Side note: I am over weight but healthy. Not morbidly obese) I was shocked, hurt, and dumb founded. I literally wanted nothing to do with that Dr ever again. Stupid me, I did not complain nor report.him. He prescirbed more steroids and sent me on my way. 2 more months pass and symptoms were worse and It felt like I was a walking cut. I was so desperate, I scheduled another appt, I had to wait 2 months this time. The day finally came. He again said I was over weight and if i lose weight my problem would fade. I explained how rediculous that sounded and demanded he give me a pap smear. He complied and gave me one. With my legs in the air he said "I don't need to wait for the lab, you have a bad yeast infection." I was livid. After the exam he had the nerve to say how much he cares about me and my well being. He gave me pills and creams and sent me on my way. Vulva symptoms started worsening each passing year after that, heck, I was walking around with a yeast infection for 8 months, I'm not surprised. Summers were the worse seasons for me because the heat and sweat were automatic triggers. In March 2013, I had gotten a UTI due to me starting my period. This UTI was stubborn and lasted a month. Since March, I have had a period every month. My body regulated my menstral cycle, I'm guessing from my internal clock. Since I've been regular, my vulva has been taking a serious beating. All my symptoms have worsened x10. I cannot have sex without repercussions, no hot showers/bath, no exercise, no heat, no sweat if i can help it, every period is excruciating. I have been to numerous urgent care and Er visits. No help. While researching my symptoms, I came across Vulvodynia and I was crossing my fingers that I did not have it. I scheduled an appt with womens clinic NP and I told her my symptoms, she said (check out this one) that my hormones were so out of whack that these symptoms are a result from having pcos. She said the symptoms would go away once my body regulated. A month passed and I found myself in urgent care again, the pn was unbearable, I couldn't function. Dr was wonderful, she examined me and found out I had another yeast infection. I had no itch, no discharge, no foul smell. Infection was so bad, WBC's were off. She prescribed pills, creams, more pills. Pn was still present but lessened. I determined that I did have vulvodynia because my symptoms were spot on according to my research and where the pain was located was a dead give away. I scheduled ANOTHER appt with womens clinic NP. After a 2 1/2 month wait, the day finally came. I showed up with a portfolio of previous u/c visits, ER visits, wc visits, Dr's and license #'s, dx, rx, pictures, references. EVERYTHING. She looked shocked. Shedid not examine me nor give a smear test, she gave me 300mg of gabapenton and said f/ u in 3 months.

Symptoms come and go. Menstration is the worst. At times it's manageable, others, not at all. Gabapenton is not working like I had hoped. I get anxiety because these Dr's and staff are rude and it seems like they just make things up as they go. I had to diagnose myself. I'm in the hands of these incompetent county medical workers. I dont know what my next move should be? Will my symptoms get worse? How can I trust my Dr? Or the NP? Who do I turn to for this?
Im lost.

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Re: This consumes me.

Post  EviE°Bee on Mon Sep 30, 2013 6:06 am

Hey mushroom! I'm so happy you responded. I've been with my hubby for 11 years. Vulvodynia started showing in 2008, flare started in March of this year. Im so glad you are cured mushroom. Your best years are still being lived. O:-)

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Re: This consumes me.

Post  EviE°Bee on Tue Oct 01, 2013 1:11 am

I'm sorry guys, this was more of a rant then a Hello. :-\

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Re: This consumes me.

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