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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

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: 22


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.

EviE°Bee

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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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