Vulvodynia Support
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» Hope to all my suffering ladies
can v return after vestibulectomy? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
can v return after vestibulectomy? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
can v return after vestibulectomy? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
can v return after vestibulectomy? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
can v return after vestibulectomy? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
can v return after vestibulectomy? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
can v return after vestibulectomy? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
can v return after vestibulectomy? 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!
can v return after vestibulectomy? 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


can v return after vestibulectomy?

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can v return after vestibulectomy? Empty can v return after vestibulectomy?

Post  Alana3 Wed Mar 07, 2018 3:03 pm

Hi guys!

I used to be a big time member on here, but got my surgery in 2012 and was good to go- don't worry the surgery is still successful and if it's recommended to you, I say go for it. My question is, does anyone know if v can come back after surgery? I went off birth control pills, but suffer from extremely heavy periods, depression, nausea and let's not get into my boobs (but seriously I am at work and want to die and I keep picking fights with my boyfriend this needs to stop). Naturally, this shit disease coming back scares the hell out of me, so i was wondering if anyone here knew if it could come back after the vestibule was removed?

Thanks!

Alana3

Posts : 1093
Join date : 2012-09-25

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Post  Guest Sat Jul 28, 2018 6:35 am


Ladies!!!
I am trying to get the word OUT!!! 20 years of “vulvadynia”, ic, vestibulitis. Whatever the docs want to calll it. It’s been beyond depressing and has made me feel downright crazy at times. Incredibly painful, living in silent pain, going to doctor after doctor just to hear that “my mind is causing my vestibular area to flare up”.
PLEASE INSIST ON GETTING TESTED FOR A MICROORGANISM BACTERIA CALLED UREAPLASMA!!!!!!!!!!!!!!!!!
It’s a VERY hard bacteria to find!! Does NOT show up in urine cultures!! There’s a very specific test to find it and you MUST insist on being tested!!!! PLEASE BELIEVE ME!!! After 20 years of this craziness I FINALLY was diagnosed with this bacterial uti and THIS is what has caused the vulvadynia!!!
Doctors don’t even know about this. My new primary care tested me after showing up with a Walgreens uti rest showing positive leukocytes. The urine culture came back negative as usual. She had a sad talk with me about vulvadynia.
I don’t know what came over her to send the urine off to a lab and get it checked for ureaplasma, but she did. I am SO grateful. I am FINALLY HEALING quickly!!
Ueraplasma only responds to certain antibiotics. I’m on doxycycline. 14 days and it may take several rounds. This is a serious bacteria and it can kill you.
Some doctors will dismiss this test and bacteria and say it’s part of our flora. NO-INSIST. If it shows up as an infection because it’s colonized, it IS the cause of vulvadynia.
GET TO THE BOTTOM OF THIS VULVADYNIA LADIES!!! DO NOT BACK DOWN!! FIND A DOC WHO WILL TEST YOU for UREAPLASMA!!! DO NOT WASTE 20 YEARS OF YOUR LIFE GOING THROUGH THIS HELL LIKE I DID.
I’ve been through biofeedback, neurontin, creams, specialist after specialist.
I’ve found small handful of other ladies on the internet who have posted the SAME about their ureaplasma diagnosis. They are doing cartwheels like I am!!!
I am really trying to get to word out!!! I promise you ladies!!!! There is a CURE!!!
DO NOT GIVE UP!!!!! Trying to respond to as many women as I can with my message!

Guest
Guest


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Post  Alana3 Sat Aug 11, 2018 12:45 pm

Thanks but I've had that 4 times and no it cannot kill you. Stop fear mongering. That's really messed up you would put that on a post where someone got a vestibulectomy for their "vulvodynia." I have the top specialists in the country working on my case. While I have tested positive for ureaplasma, my v didnt go away and still had to have surgery. While it's good to advocate new ideas, this didnt answer my question and actually pissed me off due to the fact that while YOU may have gotten relief I had to have surgery from what was positively identified as vulvodynia. Stop and think before you post.

Alana3

Posts : 1093
Join date : 2012-09-25

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Post  emalita Sat Aug 11, 2018 5:07 pm

Hi Alana3,

I believe thankGod posted in another message that the treatment she was recommending didn't work to cure her pain, and I had gotten a really nasty message from her when I sent her a private message politely asking her to use her own post versus replying. She did eventually apologize, but just so you are aware, she copied this reply to a lot of posts sadly.

Hope you are doing well!!

emalita

Posts : 249
Join date : 2016-03-29
Location : USA

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Post  emalita Sat Aug 11, 2018 6:39 pm

Looks like she just deleted her account after sending me yet another nasty PM. I'm sending the screenshots to the moderators Very Happy

emalita

Posts : 249
Join date : 2016-03-29
Location : USA

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Post  Alana3 Sun Aug 12, 2018 12:01 pm

Glad I wasnt alone there! I dont want to be nasty but really??? I'm good hope you're well too!

Alana3

Posts : 1093
Join date : 2012-09-25

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