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» Lichen Sclerosus
Yesterday at 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


How effective is vestibulectomy?

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How effective is vestibulectomy?

Post  PelvicStrong on 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

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Re: How effective is vestibulectomy?

Post  emalita on 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

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Re: How effective is vestibulectomy?

Post  PelvicStrong on 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

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Re: How effective is vestibulectomy?

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