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Vulvar Cancer Info Vulvar Cancer Info

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  #1  
Unread 08-07-2001, 07:29 PM
Vulvar Cancer Info

I just wanted you ladies to know that even with a hysterectomy and removal of the cervix, you should still get yearly pap smears. The doctor that did my TVH is 1994 said that if he left even one microscopic cervical cell, it could become cervical cancer. It's a long shot and he told me I may have to fight with doctors in the future about whether to get one yearly or every 3 years. I pushed my doctor into getting a pap this year and she found dysplasia in my vulva. I had my TVH for prolapse and pap smears coming back with HPV just sealed my decision. So even having had a TVH, HPV continued to grow and turn into VIN3 (Like CIN, but vulvar instead of cervical). I was still pretty stunned even though I had pused getting the pap and exam. I really had no idea that the vulvar tissue could become precancerous. I had a vulvectomy in Feb. '01. I wanted it OUT! A lot of tissue was cut out and my regular doctor was very concerned about sexual function. Happy to say, although it looks a bit different, the big O is no problem.
Forgive my ramblings.... my point to all this is that regardless of your surgical decisions, keep getting yourself checked out regularly!

=) Debbie
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  #2  
Unread 08-08-2001, 12:32 AM
Vulvar Cancer Info

Hi Debbie, I couldnt agree more. Yearly vault smears and checkups are essential . None of this 3 yearly. I had a checkup last week and my oncologist said that HPV is like any other virus and can sometimes just disappear on its own accord. He also recommended to boost my immune system, studies have shown that a weakened immune system can lead to outbreaks of the virus. Thanks for posting and I hope all goes well with you x x
  #3  
Unread 10-12-2001, 08:18 AM
Debbie/ vulvar stuff

Hi Debbie,

Sorry about all your vulvar trauma - I think many many women are not aware of vulvar problems or vulvar cancer - such silence about it! My site is www.VulvarHealth.Org and I aim to educate women about those issues. It's NOT a commercial site, just a site with lots of info about vulvar health & disorders. Hope the VIN doesn't return for you!!

Debby
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  #4  
Unread 10-12-2001, 12:10 PM
Vulvar Cancer Info

Thank you Debby for such great info! I am still surprised when women have no understanding of their own genital area much less that there can be some serious problems. It is hard talking about the vulvar area. Society makes women think that their parts are "nasty" or "fishy", certainly not something to talk about. Being bold and educating has become something I am very passionate about. I know where my inner labia are and was horrified to lose them. I never thought about that possibility before, what about the women that are not sure of their body parts?? Education, education, education!!!!

So again, thanks for being among the ranks fighting for understanding of a very important body part!!!

Debbie :dragon:
  #5  
Unread 10-12-2001, 01:40 PM
debbie - thanks!

Hi Debbie,

Thanks for your post! There is no doubt you are out there educating women, I've been reading some of your posts! I Am so sorry you had to go through the process of having VIN and having to have a vulvectomy too. A woman I know was just diagnosed with VIN III at the age of 23 - luckily she, too, was familiar with her vulva and they caught the changes before they became even worse.

Unfortunately many women have never ever seen their vulva before - including my 91 year old grandmother - and even knowing the work I am trying to do, she feels she does not have the "courage" to ever look because of family and societal messages she learned while growing up.

A colleague recently said that she thinks the best way to encourage women who have never looked is to start showing pictures or diagrams. So Ladies - if any of you have never seen your vulva but are becoming convinced you should (but might be afraid to) consider going to vulvarhealth.org and to the About the Vulva page. We have some links to some great pages about self-exams and the parts of the vulva and I think 2 or 3 of these pages include diagrams. Another great side is www.gynsupport.com run by a fantastic woman in Australia who is a vulvar cancer survivor, and they have an outstanding section on vulvar self-exams.

Good health to you all!

and

Viva La Vulvalucion!!!



Debby
VulvarHealth.Org
  #6  
Unread 10-12-2001, 04:22 PM
Vulvar Cancer Info

Are you sure it isn't Viva La Vulvalution instead of Vulvalucion? I thought that was great!!

I understand your grandmother not "investigating". Generations are getting more educated and accepting as time goes on. But there are still a lot of women, young women that have no clue about their bodies.

You are my new idol, Debby. We must stand up for vulvas everywhere!! (Sorry, humor is necessary when you have been through a lot!) But honestly, what you are doing is amazing. Thank you!

Debbie ragon:
  #7  
Unread 10-12-2001, 07:23 PM
vulva - what?

Hi Debbie,

The "c" spelling (Vulvalucion) is when it's used in the French sense (Viva La Vulvalucion) but when you just say it the regular English way - The Vulvalution - then it's a T. Not that it really matters but that's what I came up with anyway

I think the first person to use the Viva La Vulvalucion phrase is Dorrie Lane, of House O'chicks and Vulva University (I kid you not) and the maker of the wondrous Vulva Puppets (again - I kid you not) and she spells with a c 'cause she always uses it in the French way.

So long as we're stirring things up a bit and getting more women to take charge of their health, I don't care! There are way too many horror stories out there and I think we can prevent a good deal of them. I think the more we break our silence whether on message boards or web sites or magazines or to friends, the better!

LOOK OUT WORLD!!!!!!!!!! The Vulva Gals are on their way Bringing awareness to a theatre near you... okay, sorry for the wacky sense of humor, it's getting time for me to hit the hay!

Debby
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