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Vulvectomy DONE!!!!!! Vulvectomy DONE!!!!!!

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Unread 06-01-2004, 08:32 PM
Vulvectomy DONE!!!!!!

I am so sorry that you are in so much pain. I wish I had a magic wand and could get rid of the pain that you and so many wonderful woman on this board have. Hang in there. I would talk to your doctor about pain management.
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Unread 06-01-2004, 08:51 PM
Vulvectomy DONE!!!!!!

I got the email and wanta keep in touch with you i go again next week to see what if any changes since last laser and will go from there!!!!!!!!!! I do hope you are feeling somewhat better? The pain so terrible sounds like!!!!!! will keep in touch!
Unread 06-01-2004, 09:10 PM
Vulvectomy DONE!!!!!!


I have prayed for your recovery and I pray that the pain can be controlled during your healing. I am heartbroken that you have had to endure such a traumatic ordeal and hope that you have spoken to your doctors to help manage the pain. I wish I could help you feel better, you are in my thoughts constantly.
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Unread 06-03-2004, 08:27 AM
Vulvectomy DONE!!!!!!

i can't imagine how you must be feeling and i'm so sorry for your pain and suffering!! i did a little research on the internet, and there is recontstructive surgery available for women who have had a vulvectomey, though i'm sure MORE surgery is not on your mind right now!!! the title of the article was "Excellent results..." something i can find the link later and re-send it.

i do hope you get your pain under control and that each day finds you stronger and feeling better.

very sincerely,
fluffy lemur
Unread 06-24-2004, 12:32 PM
No longer alone!!

Oh you poor baby! I know exactly how you feel and I think only one other person from HysterSisters may too. Vulvectomy is a very rare surgery. I had my hysterectomy in 1994 and thought all I had to worry about from then on was my ovaries. No one told me I could get cancer on the OUTSIDE!!! The good news for you is that YOU WILL HEAL!! I promise. I thought I would never heal. I felt mutilated and the pain was worse than anything ever! I have had 9 surgeries (yup 9, and only 3 weren't gyn involved) and that was the most horrific. What shocked me was that it was an OUTPATIENT surgery. My gyn said it was all insurance allows and she didn't seem all that concerned. She is a good doc but I guess it is just the way it is and since she has never had her labia removed personally she cannot imagine the hell it really is. I was relatively numb and out of it on the ride home and remember getting out of the car and not waiting for hubby to help me... I just walked as fast as I could to my bed. (He kept yelling "wait! I'll help you!!") I just wanted to lay down fast and get as much Percocet in my body as I could. I cried and cried with pain for days. I am no ninny either!! I have daily migraines and had them daily for the past 8 years. Vulvectomies are HELL. You have to think about it, all those nerves down there that make you "happy" (you know what I mean! ~~ ) get really mad when someone cuts on them! I had cervical biopsies a lot before my hysterectomy and I thought those hurt.... NO WAY!
I thought I had an infection and my gyn was in surgery so I went to my internest (She is great). She looked and freaked out. She had never seen a vulvectomy before and told me I looked "butchered" (yup, quote). She sent me to the only gyn oncologist in a 300 mile radius and he told me that the cancer was way worse than I thought and took biopsies out of that raw bloody mess! Later, after waiting 6 weeks to hear from him he said it was just inflammation. Jerk. I fired him pretty quick. My gyn that did the surgery reassured me that I would heal and she was right. Now even if it comes back as the worst cancer ever I am sticking with her and not the onc-gyn jerk.
You will heal. It takes time. You will feel mutilated, invaded, torn, a sense of loss(seriously) and wonder if you will ever have sex again and if you do how will it be? That part will come after you are not hurting as much. I'm not sure how much was taken off in your surgery, please share as much as you like in private email, here or phone. Both of my inner labia were removed and my perinium was gone. My outter labia that turns into butt cheeks was sewn together completely. I was hoping I wouldn't look like that forever! But I grew a new perinium out of scar tissue and the underlying tissues. My rectum puckers a little differently, sorry if that is too much info for you gals but it is true. And the most amazing part is that the opening of the vagina is rounded at the bottom just like before. I have no idea how that worked out with as much that was cut out but it did. Now 3 years later... wow! 3 years! I think I could line up with Penthouse women and most men wouldn't be able to point out which twin had the vulvectomy(sorry, bad joke). But seriously, I don't think what was once so horribly mutilated looks much different than anyone else. It looks different than it used to but all women are so different. And it also works just fine too. I have to say that all of my gyn problems and HRT have made sex not happen very often but when it does it is pretty great.
I hope I have helped you a little. I know how horrible you feel now. If I could take it away for you I would. Even if I had to take the pain on myself. I promise.
Please feel free to contact me in any way, I mean it. My email is <snip> and my phone is <snip> . Let whoever answers the phone know you're a hystersistert and not a bill collector or I won't come to the phone. Period!
I hope this may make you laugh.... the porn star Houston was on Howard Stern and told him she didn't like her labia, she felt they hung down (ragged out, I say!) and she was ELECTING to have this surgery done. Can you believe that??? She did have it done and was happy afterward. One of 2 things happened... either when you elect to have this done and cancer is not an option the pain is not as bad or she has no nerves left down there after a glorious pornography carreer!! ( hope I didn't offend anyone <blush>)

Hugs and kisses to all... especially you, darlin!

Debbie :dragon:

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