Vulvodynia Support
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» Hope to all my suffering ladies
How effective is vestibulectomy? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
How effective is vestibulectomy? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
How effective is vestibulectomy? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
How effective is vestibulectomy? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
How effective is vestibulectomy? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
How effective is vestibulectomy? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
How effective is vestibulectomy? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
How effective is 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!
How effective is 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


How effective is vestibulectomy?

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How effective is vestibulectomy? Empty How effective is vestibulectomy?

Post  PelvicStrong Thu May 05, 2016 9:41 pm

Hi everyone, I'm new here.
I was diagnosed with Endometriosis, Pelvic Floor Muscle Spasms and recently Vulvodynia. They all come hand in hand. I had a laparoscopy in Dec. 2014 for Endometriosis, a Mirena installed after to prevent Endometriosis recurrence, Botox in Dec. 2015 for the pelvic floor and I've been going to PT since my surgery. The botox is more diagnostic to rule out that the vulva pain isn't only coming from the muscles but the nerve as well. It has made the spasms go away but also made my pelvic floor muscles really weak. My doctor said that I definitely need vestibulectomy as none of the treatment has helped with the 6 o'clock pain (I'm on ketoprofen cream and Gabapentin. I tried Amitriptyline and Hydroxyzine for 6 weeks, didn't help). It's provoked pain, so only hurts when it's touched and during sex. The painful skin around 5, 6, 7 o'clock is also red. On top of that, I have chronic incomplete bowel movement, which is another issue related to pelvic floor. I read that a few years after the surgery, the pain comes back because the painful nerves eventually grow back. Also, not sure if it's the vulva pain/fear or psychologically not aroused, I have very low libido and when I put dilators in my vagina, internally it's still very uncomfortable despite the botox. It's the feeling that something is pushing my organs and it hurts when I go really deep (probably hitting the cervix?).

I just want to know how effective vestibulectomy is. What is really involved in the surgery? How long does it take to recover? I would also appreciate any advice on how to communicate this type of surgery with your employer because they will need to know what type of surgery I'm having and how long I'll have to take off. Any other advice or similar experience will be greatly appreciated.

PelvicStrong

Posts : 5
Join date : 2016-05-05

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Post  emalita Thu May 05, 2016 11:12 pm

I have never had surgery; so I cannot comment on that piece. However, as far as your employer goes, I'm not sure where you're located, but in the U.S. you are not required to disclose the specifics of your diagnosis in order to qualify for FMLA. So, you would just go about it like any other FMLA request, indicating to your immediate boss or HR department that you need to take medical leave.

Below is what I found from the following link regarding what is needed during the request: https://las-elc.org/fact-sheets/taking-leave-from-work-for-your-own-health-condition

"A request from your employer for medical certification showing your need for leave (such as a doctor’s note) must be in writing. Certification does not have to disclose your diagnosis, but it must provide enough information for your employer to verify your need for leave. It should include:

ƒ- the date your serious health condition began;
ƒ- the probable duration of the condition;
ƒ- a statement that your condition makes you temporarily unable to work at all or perform one or more of the functions of your job (you should discuss the functions of your job with your doctor, and the doctor’s statement should reflect that discussion);
ƒ- the probable duration of your need for leave; and
ƒ- a statement verifying your need for intermittent leave or a reduced schedule, if applicable.

In most cases, your employer cannot ask you or your doctor for more than this basic information. Your employer may not contact your doctor directly without your permission."

Hope that helps!

emalita

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

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Post  PelvicStrong Thu May 12, 2016 1:19 am

Hi Emalita, thank you for your response. I'm in the US. Legally, I know that I have the right to keep it private but I work with a very small team and we work very close with each other everyday. People are generally supportive and caring although I know for a fact that if they know what the surgery is for, there will be gossips. I only share my condition with my doctors and very very close friends, who I know won't judge me. So I'm thinking more of a strategy on how to tell them and what to tell them about the surgery as a courtesy because to be work absent for a long time at my job is also somewhat frown upon as it creates a burden for my coworkers. My coworkers know that I had a laparoscopy for Endometriosis but that surgery probably takes longer to recover than a vestibulectomy so essentially I need to explain to them the type of surgery I will have to give them an idea on how long I will be out, as well as paving a forthcoming work environment where no questions will be asked.

PelvicStrong

Posts : 5
Join date : 2016-05-05

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