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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 …

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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 …

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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 …

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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

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 …

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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


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.

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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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