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Vulvectomy....looking for someone who understands.....

Vajayjay's picture
Vajayjay
Posts: 10
Joined: Feb 2016

I had a partial vulvectomy on Feb 8 2016.... It's a very lonely feeling when you can't find anyone going through the same thing to talk to. I have searched and searched and come up with no one. I know my "new" type of cancer is rare but there has to be someone out there going through the same thing as me.

Here is a little of my story....my first abnormal pap was when I was just 19... I was dx with cervical cancer (very early stage 1) I had a cone biopsy and cryotharapy. Then at 31 I had another abnormal pap, I was told pre cancer was found again on my cervix. I had a hysterectomy at 31. They left my ovaries so they didn't throw me into mentapaus. I went many years with out having a Pap test done. For the past 4 years I have been having them yearly and each time they are abnormal.... HPV18 always present so I go through the colposcopy and they always say scar tissue. This this it was different. Had my pap in Dec 2015 and once again the HPV18 was found and I was scheduled for my colposcopy in mid Jan. i knew it wasn't going to be good news when the "samples" required stitches. I got the call just 3 days later and was referred to an Gynecology Oncologist. My appointment was Jan 28  2016. I I didn't want anyone to go with me so I went by myself, I was told it was only for a consultation And nothing else. Turned out it was a consult and another colposcopy. i was told I needed surgery sooner than later but the good news was I wouldn't be a long term patient there. Had my partial vulvectomy (was told I had VIN III and a lot of pre cancer cells) Feb 8 2016..... This is by far the most painful surgery I have ever had. I didn't ask any questions....had no idea what to expect....when ever they asked if I had any questions I drew a total blanke could not think of anything to ask. ( should have taken my husband with me) 

Had my post op follow up (they lease red off 2 more spots of cancer and removed all the pre cancer) and now I wait....They will retest everything in 6 month. I feel like I am on an emotional roller coaster and am searching for someone to talk to that understands....someone going through the same thing or been through this. I have a lot of support but they don't truly understand.....

if you know someone or hear of someone.....please send them my way....I check the site at least a couple times a week.... I may not post but I do check.

God Bless you all.....

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

Sorry you haven't had anyone to talk to!  I know there are some on this site who have gone through what you have...I remember reading the posts!  I think they don't post or visit as much anymore.  I am from the Uterine board myself.  I do know someone who did have vulvectomy...twice.  My SIL had the swelling, lump, itch, ect.  She thought it was a yeast infection that made a lymph node swell.  It wasn't, so she had the left side vulvectomy done.  Six months later it was back, but on the right.  She had everything down there removed, everything....She had her daughter to help, but she was in so much pain she had to stay drugged up for weeks just to survive.  It was awful so I do sympathize with you even if I could not even imagine your pain!  She had all this done 5 years ago and is fine though forever changed.  Relations between her and my brother are not possible, but they cope and are enjoying their 4 grandkids.  She was in her late 40's when this happened.  The recovery was very hard and long, but being cancer free is so worth it!  Hope you find someone who can relate to your type of pain, but even if you don't ,right away, we still welcome you on any board here and especially the "Below the Belt Cancers"!  Best, Debra(Jo)  

Vajayjay's picture
Vajayjay
Posts: 10
Joined: Feb 2016

Thank you! I know I am not alone and I just have to be patient. I can sympathize with your sil.... I lost everything below the clit and between the outer lips. I am still just 1 month post ops and can't even think about sex....all I can do is pray it doesn't come back. There isn't much left they could take. 

i tend to try to deal with everything on my own because most don't and can't understand. It is a comfort to know there are people here.

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

If I can help you at all, I am up late.  Keep coming back and checking this board and all the other boards and keep posting because there will be someone to help!  These are good people who want to help!  Hoping you get some help soon.  Take care!  Best, Debra(Jo)

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

and a great, comfortable support to all the ladies on not just the uterine board but also all the "below the belt" female cancer boards. I can only imagine how difficult your diagnosis and now post surgery recovery have been. It sounds like you have gone through the worse part of the treatment protocol. I'm sorry that you have suffered and can only wish that today forward will be an easier road to travel.

Wishing you a speedy recovery,

Cathy

Vajayjay's picture
Vajayjay
Posts: 10
Joined: Feb 2016

Thank you Cathy and Debrajo! I am taking everything one day at a time... Every day I try to remind Myself that it could be worse and focus on the good. I try to spend a little time each day on here reading and searching. You 2 ladies should be very proud of the love and support you offer to everyone... I see your names a lot on the boards I have visited. I am honored that you have taken some time to reply to me! 

tammysalterego
Posts: 7
Joined: Apr 2012

Hi. I am 5 years through my treatment...excision of cancer near the opening of my vagina. I'm not sure what a vulvectomy is but they removed a lemon sized piece of tissue, then tested lymph nodes in my groin ( the few they removed were negative) . I had unbearable radiation on my vaginal area daily for six weeks and chemotherapy weekly for 8 treatments. One year later I found a lump in my groin area. They removed more lymph nodes and found them positive so more radiation in my pelvic area. I am almost to my five year mark cancer free but still suffer horribly in my vaginal perinium area. I would be happy to discuss anything with you as I don't know anyone else who has had my experiences.

Tammy

SUNSET
Posts: 6
Joined: May 2016

Tammy God bless you..may I ask your age?  How did you do with radiation?

Laura2051
Posts: 34
Joined: Aug 2016

Last month I had a radical vulvectomy. They removed my clitoris and a clean margin all the way around it. My lymph nodes were removed too, as the cancer had spread there. I have a radiation consult on the 24th because they want me to do radiation and chemo, although in "low doses". I am not done healing from the surgery yet which was done on the 26th. Feraful of even low dose radiation and its long term effects. The cancer had spread to my skin around where my left lymph node was, thus they want radiation and chemo for a better survival chance. I will never orgasm again. Can't even think about sex. I look hideous. I just turned 53 and have been married 21 years. I feel your pain and would be willing to talk anytime you want. Anyone had experience with low dose radiation and chemo??

 

 

angdonnie
Posts: 1
Joined: Mar 2016

Hi. I have not had a vulvectomy. I do know someone that has and she is living a normal happy life now.  I've had VIN III once in 2012, and had laser surgery for it. Today, during my yearly exam with my gyn oncologist she saw some more places, did some biopsies, now we wait. If I can help with anything,  I'd be glad to. My surgery was more like healing from a burn afterwards,  and had to use silvadene cream. 

SUNSET
Posts: 6
Joined: May 2016

May I ask your age?

SUNSET
Posts: 6
Joined: May 2016

My mother 86 has vulva cancer..vulvectomy 2 years ago..now it is back..can she withstand radiation?  How did you make out..I sympathize all cancer is horrible but this one is really bad

katniss
Posts: 3
Joined: Oct 2013

Hello!  I have had vulvar melanoma twice. The first time, I had a vulvectomy. The second time, (as if the first time wasn't traumatic and painful enough), I had a clitoridectomy, to the pelvic bone.  However, I am alive with no evidence of cancer today, nearly 5 years after the initial diagnosis.  Of course,  a major life changer, but survivors cannot be too picky when it comes to being alive.  I hope your recovery is going OK!!!  It is horrific, but life gets much better.

Dottiemay
Posts: 2
Joined: Aug 2016

I am on my 4th partial vaginectomy and don't have much left so I feel your pain.  People who suffer from vaginal cancers have the added burden of often having to suffer in silence because nobody wants to talk about the "V" word. We don't have an official color; they don't host parades and fundraisers in our honor.  Nobody is going to wear a T-shirt that says Save the Vagina!  I've been too embarassed to even talk to my grown sons about what I'm going through.  In fact the only people I've been able to talk openly with are my closest girlfriends.  If someone in my office asked me about the surgeries I keep having and I were to say that I'm having part of my vagina removed, they would probably look anywhere but at me and start commenting on the weather.  We really do suffer in silence.  But there are a lot of us and we are always here to vent to! I am only 55 and have been dealing with this for the past 6 years but I am still here and living a good life!  My prayers are with you.  I am quite suprised actually with how few women there are on this board.  We need to stick together! I am always here to vent to!!

Laura2051
Posts: 34
Joined: Aug 2016

After a radiacal vulvectomy and all my lymph nodes from groin removed July 26th I finally got my catheter out this past Friday. Still hugely swollen. I'm 53 and wondering what is ahead for me. I have a consult for radiation on the 24th. Did you have low dose radiation and chemo? They are recommending thios to me as the cancer spread to my skin near where my left lymph node was. How much better does it get?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2854
Joined: Mar 2013

Dottiemay, I CAN imagine how people react.  I could see how uterine cancer made people feel uncomfortable but vulvar?  Oh - forget it - no one wants to talk about that!  While cancer "down there" has some stupid taboo, you ladies are in my heart.  I can't begin to imagine everything you ladies are suffering, but I pray for you and will talk about ALL types of gynecologic cancers.  

FYI - I go the National Race to End Women's Cancer in DC every year - it benefits gynecologic cancers and the one team name is:  Read My Labia - No More Cancer.  Seeing a 70 year old man in that t-shirt?  That says it all.

My prayers for all you ladies. 

Dottiemay
Posts: 2
Joined: Aug 2016

Thank you so much for your reply!!  I've never heard of this race but I will definitely look it up.  I live right next door in Maryland!  And by the way, I seriously love your sign and will have to make one.  Thanks so much for making me smile!  Oh and thanks for the tip on your page about the Foundation.  I plan to look them up as well.  It's so nice to know that there are other people who undestand.  You will be in my prayers as well. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2854
Joined: Mar 2013

Dottiemay, I just cannot imagine what you, Vajayjay, TJ, Laura and the others are going through.   I walk the race because of the women on this board.  I walk for the women who can't.  I walk for the women I miss so much who have been taken from me by a gynecologic cancer.  I carry all of you with me.  

If you want to laugh more I carry that sign with me flying to Washington and last year some young men made the comment, "I love lady parts" and I thought - you have no idea!!!  I think some people give me funny looks but I am not afraid.  All the ladies here deserve everyone to know about our cancers.  

Emotionalroller...
Posts: 2
Joined: Feb 2017

This the same story as mine it is an emotional rollercoaster. It affected me mentality more than physically. I'm still trying to adjust..... It's only been 3months,a and I'm still in pain n have lots of douts about healing. It seems like it's taking forever. Don't know how to feel

Emotionalroller...
Posts: 2
Joined: Feb 2017

I'm really trying to deal with my ordeal every one always telling me it will get better,I know it will, but it seems like I'll never heal.1 laser surgery. And it came back, 1skinning surgery and it didn't heal, and last but not forgotten. The vulvectomy. This problem started about 8 years ago n I'm praying it go away n never return this. Just found out it's hereditary. So I pray my girls and granddaughters never have to go thru it pray I'm the last generation that has to deal with it......

Laura2051
Posts: 34
Joined: Aug 2016

I understand about the emotional rollercoaster. It's been about 6 months since surgery and about 4 months since chemo and radiaition. I had a radical vuvlvetomy and  lymph nodes removed from groin. I have no clitoris and my vagina is so tiny from all the radiation I can hardly get half a finger in never mind the vaginal dilators they want me to use. When I work on stretching my vagina it hurts. My husband has worked up to half a finger in but I cry not only due to discomfort but when my husband touches me it is supposed to feel good but it doesn't anymore so it makes me sad. What Does help is walking every day, Good pelvic floor excercise, the walking is and uplifting when I am walking in the woods. I think it will get better for boh of us. We will continue to heal both physically and emotionally. You are stronger than you think and you are not alone. I am free to talk any time.

JanuaryDaybreak's picture
JanuaryDaybreak
Posts: 20
Joined: Nov 2016

Much love to you, my dear sister.  I sent you a PM a while back, but I don't know how the PM system here works.  :(

Do you have a cancer social worker that you can vent to?  She may also be able to recommend counseling, other support groupas, or even financial aid.  I'm fortunate that the radiation oncologist works with the best cancer hospital in our metroplex; he and his team, including the social worker, have been so good to me.

I do understand how frustrated you must feel, and how hard it is to feel that your loved ones can truly understand.  Like you and the other ladies, the emotional aspect has been just as difficult as the physical aspect for me.  So I can wholeheartedly empathize.  I've already told my story, so I won't hijack your thread.   What I will do, however, is hold a hand out to you, and crawl together with you and my other sisters to the finish line.  I'd hug you if I could, but for now, I hope a virtual hug will do.  I'll PM you my e-mail address if you'd like, and we can talk any time.

Be kind to yourself, and remember that you are still the same person you were before.  You're so much more than your diagnosis.  

Lynette324's picture
Lynette324
Posts: 1
Joined: Apr 2017

I had what I thought was an infected hair bump. My main issue was that it was there for a couple of years. It took 3 doctors before I finally was able to get it removed with a partial vulvectomy. Had it removed March 2, had a checkup March 24 and my life changed. He sent me straight to Gynecologist oncologist. She also did a vulvectomy, same spot but deeper and longer. That was April 12 2017. I feel blessed no treatment is necessary. I will now have checkups every 3 months for 2 years. This is my new normal but how do I handle the mental effects?

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2854
Joined: Mar 2013

Lynette - I am very sorry to hear that three doctors did not pay attention to you, it doesn't sound like they conducted further test either.  Please be sure to continue  working with only the gynecologic oncologist going forward.

Kacsalley
Posts: 6
Joined: May 2017

I am just starting on this journey and it is reassuring to know you are there. I hope you will help me thru this as my family is having so many other difficulties now. I don't want to burden them, but I know this won't be easy. Thank you...hope to give you good news about me after my oncologist visit. Vulvar cancer, haven't gotten the full news yet.    

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2854
Joined: Mar 2013

Kacsalley, I am from the Uterine board but, like a few others, check-in on our sisters with other 'below the belt', gynecologic cancers.  Please be sure you are working with a gynecologic oncologist - this is a super specialized field and they deal with our cancers the best.  

I can't even imagine what was going through my families mind, and while I shared some, there were certainly the deep, dark thoughts that only my mind would go to.  It is helpful to have others out there who are going, or have gone, through something similar.  

I hope you, January Daybreak, Lynette - to name a few, come and share with eachother your experiences.  It can get quiet here but you are never alone.  It is just finding the others who can share.

stellareporter's picture
stellareporter
Posts: 6
Joined: Jul 2017

Hi there!  This is my first time on this board.  I am 47 years old and have had a partial vulvectomy in December.  My margins were all clear after surgery. I just went for my six month checkup and it's back.  I have an appointment a week from tomorrow and I am scared that I'm looking at a full vulvectomy.  I am really scared.  It's not something that you can really talk to people about unless they've been through it. 

Mybooboo0128
Posts: 1
Joined: Feb 2021

February 24, 2021 had partial vulvectomy. Never even knew there was such a thing. Found out January 28, hence my name Mybooboo0128. Still waiting on pathology. Scared to pieces, husband and family trying hard to be understanding, but not sure anyone that hasnt gone through this can be. Anyway, Ill keep in touch and keep everyone in my prayers. .Not sure if any of y'all are still checking in. Be well and safe...as if Covid and quarantine wasn't bad enough! xoxo

 

 

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