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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 3

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

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

Fri May 27, 2016 6:50 am by Lucci


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

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.


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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!


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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.


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Re: How effective is vestibulectomy?

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