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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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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.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

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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