Vulvodynia Support
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» Hope to all my suffering ladies
This consumes me.  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
This consumes me.  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
This consumes me.  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
This consumes me.  EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
This consumes me.  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
This consumes me.  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
This consumes me.  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
This consumes me.  EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
This consumes me.  EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


This consumes me.

2 posters

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This consumes me.  Empty This consumes me.

Post  EviE°Bee 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

Posts : 72
Join date : 2013-09-30
Age : 40
Location : Southern Cali

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This consumes me.  Empty Been there

Post  mushroomvisionlala Mon Sep 30, 2013 3:40 am

How long?

mushroomvisionlala

Posts : 10
Join date : 2013-09-27

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This consumes me.  Empty Suffered too

Post  mushroomvisionlala 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.

mushroomvisionlala

Posts : 10
Join date : 2013-09-27

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Post  EviE°Bee 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

Posts : 72
Join date : 2013-09-30
Age : 40
Location : Southern Cali

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Post  EviE°Bee 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:-)

EviE°Bee

Posts : 72
Join date : 2013-09-30
Age : 40
Location : Southern Cali

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

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

EviE°Bee

Posts : 72
Join date : 2013-09-30
Age : 40
Location : Southern Cali

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