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Post Radical Vulvectomy and total Clitoridectomy

cathe4
Posts: 3
Joined: Mar 2013

I am two months past Radical Vulvectomy and total clitoridectomy. I have been hospitalized 3 times, totaling more than 20 days. Massive infections in the lymph node incisions, seroma, jp infections, wound vac, and lymphedema. Seems I have had almost every complication you can think of. Facing yet another new drain insertion in 3 days.

At my doctor's visit this week, my doctor asked my husband and I why we weren't "having sex." Is he for real? We haven't even had a chance to get my healing to the point where we can discuss what to do with that part of our lives. And with the doctor's statement that "sorry, but there will be no more orgasms,' we have little to look forward to.

Does anyone have any insight into this hot mess? We have researched until we are blue in the face, and have not found any information regarding my particular situation. Any help would be appreciated!

Andeoup's picture
Andeoup
Posts: 6
Joined: Apr 2013

My Gynecologist removed Labia Majora Tumor on Dec. 6, 2012 and was diagnosed with mucinous adenocarcinoma undetermined origins. A battery of test was performed: Blood test, MRI, CT Scan and PET Scan yielded no cancer results. Gynecologist Oncologist on I had February 4, 2013 performed and Left sided radical Hymenvulvectomy,  Labia Majora removal, and the Left groin node dissection. This yielded no mucinous adenocarcinoma. Gynecologist Oncologist has determined that Labia Majora Tumor must have been the primary site. There is no scientific evidence to support this! Just his opinion!

I feel like Calamity Jane. My Oncologist has belittled me by telling me that I have more problems than all his patients put together. I have had three Hematoma one with each surgery and I now have one on my thigh along with Lower Quadrant Lymphedema, Treatment: Lymphedema  left lower quadrant  = Complex Decongestion Therapy/MLD (manual lymphatic drainage)/MLLB (multilayer lymphedema bandaging) Flextouch Tactile System trunk and left leg. The Hematoma on my thigh was from falling down a stair case due the Lymphedema and Left groin node dissection. I now have a Lymphatic infection in my left lower quadrant. The Hematoma (6 inches diameter) on my thigh will require surgery and has been in my thigh since February. I will set a date with my surgeon to remove on May 24, 2013. So much damage from the cancer treatment it is unreal. My urethra now sprays everything when I urinate. Of course my Oncologist assured me he left the most important part the opening to the Vagina for sex! Sick of his humor.

katenraj's picture
katenraj
Posts: 13
Joined: Aug 2012

Hello.

So sorry to hear of your pain. I am here looking for answers this morning too. I was doing great after Stage 2 Vulvar cancer theated with chemo and radiaton. Having new pain at scar tissue site. Going to St Joes today Pelvic pain center hoping they will help. Horrible cancer for sure. Side effects brutal. But charging ahead like you. All we can do it try and try. Exercise is my therapy these days. :)

Traci Duncan
Posts: 2
Joined: Nov 2013

OMG, i would have slapped the pooh out of my Dr. if he had said those things to me. I understand about the clothing i can't wear regular panties anymore because of where the drain tubes were. so i wear women's boxers (lol) but i have to wear them inside out because the seams irratate me. Shoes and socks are a joke, my feet and ankles are always so swollen it hurts to wear them. My legs hurt just about all the time from the lymphedema.  As far as sex goes it will come and you can have orgasms. You just have to be creative and have a patient hubby or bf.  Hope things get better soon for you. take care

Andeoup's picture
Andeoup
Posts: 6
Joined: Apr 2013

I understand this is a horrible cancer to deal with. Clothing will never fit the same and you will never be the same because of the damage left behind. Sending you much TLC....

cathe4
Posts: 3
Joined: Mar 2013

I truly feel your pain. I have now had 3 leg surgeries because of lymphedema and seromas forming. I have worn a wound vac on both legs, and after 5 months, I am cutting this all off. I am refusing to do the lymphedema leg wrapping, which will keep me out of commission for another several months. I am just using compression socks occasionally with tennis shoes. Pain continues, but is lessening. After 4 hospitalizations totaling 5 weeks for infection related to bilateral lymph node dissections (which were normal), I have had it.

I would love to resume some kind fo sex life with my husband, but realistically, I have no idea when the surgery site will no longer be painful. In addition, without a clitoris, we have even bigger problems. I am searching for a "new normal" for my life, but I am unsure if this is possible. And you are right about clothing, at least where my legs are concerned. When I look down, they look like someone else's legs. I refuse to give up, but I am turning to counseling for some help to adjust. My prayers are with you....

Traci Duncan
Posts: 2
Joined: Nov 2013

I know the feeling hon. It will take a while before you feel like having sex. My Dr. told me it would take a long time to heal. Don't rush into doing household chores either, that can cause setbacks. I went through this in Feb. of 2010. Your Dr. is wrong about orgasms. You'll just have to be more creative at getting there. Your hubby will have to be patient and understanding. Don't rush the sex either, wait until you are ready to try and it might still be tender. It was 2 years before i had my first post surgery orgasm. Thank God my hubby is patient. He has sutck by my side through all this and is still here. It takes me a lot longer than normal to have an orgasm but he is willing to put in the time it takes. I also have lymphedema, it ain't fun but I'm alive.

Main thing is just take it slow. I wish i had know about this site before now. It never occured to me that it was here. You don't hear about our kind of cancer.

Anyway wishing you the best. Hope i helped at least a little.

ChD
Posts: 2
Joined: Jan 2014

I had radical right-sided vulvectomy, clitorectomy and bilateral lymph node biopsies in May 2013.  I too was rehospitalized a few weeks later with a painful seroma in the left lymph node area that required a drain for a few weeks.

Just wanted to say that 8 months out from surgery I have healed up very well.  I am back working, walking, and sitting and just in general living normally.  My lymph node incisions still look a little lumpy and the skin is pulled tight over the vulvectomy site, which still feels numb and slightly painful at times, but that pain seems less every month.  I had been worried I would have it forever.  The pain I had down my legs and up into my back is now mostly gone, too, with still some occasional issues on the right.  One of the weird things for me was that I had a very small swollen lymph node (seroma?) on my right side which actually caused more pain for a longer time than the one on the side that that was so huge and inflamed it had to be drained.  I finally had the small one drained a few weeks ago.  They sent it off to be biopsied, and it came back NED, which was good.  But within a week it swelled right back up to the size it was before.  Oh well.  I am surprised to find that orgasm is not a problem at all for me.  But it took me until fall to even get up the courage to attempt sex, and my surgeon also seemed surprised by that, which I thought was funny.  How could he not realize I would be scared to death that it would hurt?  He's a great surgeon, though.  It just took me a long time before I wanted anyone within arm's reach of that area.  At 2 months out, I would have kicked anyone who even tried.  Not that I could kick; just the thought of that probably would have made me feel faint.  I suppose we are all different in how long it takes us to regain a sense of normalcy in our lives after undergoing something as major as all this.  We will all have different complications too that make it more or less difficult.

At any rate, there IS hope.

My biggest challenge now seems to be fatigue.  Not having undergone chemo or radiation, I have no idea where it is coming from.  I did go back in for a second surgery on the opposite side in October, which was outpatient and much easier to recover from, but then they found melanoma in situ on the pathology, which doesn't show on my skin yet.  We have been doing multiple punch biopsies to attempt to locate it so we can remove it.  I suppose surgeries alone can take a toll on a person's energy level, not to mention the diagnosis of cancer and all that involves.

NoTimeForCancer
Posts: 443
Joined: Mar 2013

I see some of the women have not back to the page for some time.  I hope they at least just visit because I would like them to know too that you are all amazing warriors. 

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