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Littlejfroglegs's picture
Littlejfroglegs
Posts: 3
Joined: Apr 2017
Littlejfroglegs's picture

Posts: 1
Joined: Apr 2017

Apr 17, 2017 - 12:00 pm

I'm a 41, almost 42yo single mother to an amazing little 5 yo boy.  I was recently diagnosed with VIN III after a biopsy and then oncology/gynecology surgeon consult at which time I was scheduled for a Wide Local Vulvar Excision Surgery on April 11th, 2017.  It all happened so fast, I didnt know what questions to ask.  After all, when you hear "Cancer" you think of life saving measure (type questions), not esthetics or anatomy post surgery.  

Journal entry:  I'm 6 days out from an Upper Vulvar Wide Local Excision surgery.  I can manage pain mainly with ibuprofen.  Still very tender and sore.  Quite a bit of swelling (from what I can tell) still. Bruising starting to appear above incision area.  Dissolvable stitches are still intact.  I don't understand what was removed or how the stitching was done.  Nor, what I'll look like down there.  I was told that my clitoris was not removed, but I'll be honest.....I don't recognize myself!! I look downward and all I see is swelling, bruises and skin stitched together where there never used to be.  I'm numb and don't want to probe around with my fingers and risk an infection or disturbing the stitches.  I'm scared and confused and angry and feel left in the dark.  My post op/next appointment, isn't until May 3rd, 2017.  I feel like I'm going crazy!!  

 Can anyone help me out?  Has anyone else experienced this?  Can anyone tell me if theI've had a similar experience and if the surgeon "relocated/reconstructed" any anatomy?  

 

Sincerely, 

a single, scared mom

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2901
Joined: Mar 2013

Littlefronglegs, please try to take a breath.  It is all so overwhelming and you just had major surgery.  It takes awhile for the swelling to go down.  When I had a complete hysterectomy I was surprised how long it took and you have had some major reconstruction.  Be kind to yourself.  I know that is easy to say but I remember wondering WHEN will I start to be 'normal' again?!?  Most of us have never had this kind of major surgery and don't know what is really entailed in RECOVERY.  I think it was six months before I started to feel more like myself.  I remember looking down and being so swollen I wondered WHAT THE HECK IS GOING ON???  

I say all this with hope that you believe this takes time.  I don't think I have ever heard anyone say that they have been told how long it takes to recover, but it does.  Of course you are scared - and that is ok too.  You have a lot to think about.  If you work, please reach out to your Employee Assistance Plan (EAP) to find someone to talk to if you need quicker responses than what sometimes happens here. 

Please know there are women who have undergone similar situations, but they can be hard to find.  It helps to find others who have gone through similar things.  Please let us know how you are doing.

Littlejfroglegs's picture
Littlejfroglegs
Posts: 3
Joined: Apr 2017

No time for cancer, 

I can't tell you how heartwarmed I felt when I saw your reply to my post.  Throughout my initial search of this website and reading other women's experiences, your username, picture & both kind and encouraging words have surfaced over and again, throughout!  Thank you for taking the time to respond to my post.  I needed to hear from someone who's been through any part of the journey.  (Regardless of the same scenario or not).  Thank you for the encouraging words that any woman in any of these unchosen circumstances desperately needs to hear!!  Your heart is pure, messages are heartfelt and calming to me and all the women with cancers darkest hours!  

God bless you!!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2901
Joined: Mar 2013

Littlefroglegs, you are kind, but it is only because I can recall my own terror.

When I was going through everything I would call my sister who would cry.  I asked her, "why are you crying? what would you do?"  She said she would being taking it a day at a time.  I told her that is what I was doing - it is all I could do - it is all any of us can do.    

Hma4's picture
Hma4
Posts: 38
Joined: Jan 2017

I can't even imagine. I hope someone her can help. You should be able to call your doctor and have him/her answer your questions- most of the time - I could leave a message and the nurse would get back to me with the answer. Prayers for a full recovery. No Time For Cancer - you are an inspiration!

Kacsalley
Posts: 6
Joined: May 2017

Well, it is June now and I am 2 weeks post survery. I was wondering how u r doing as I read ur first posting and thought, "wow, that is me!". I am dealing with tennis ball sized cyst on left side groin where the Sentinel node was removed, hurts worse than surgical site. Did ur swelling go down?   I have used my iPad to take pics so I can see what is happening and I must say...that first viewing was scary! I too am hoping this is not my "new" normal as the Doc called it.  Hope u r doing well by now! 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2901
Joined: Mar 2013

Kacsalley, it has been a little quite here but I know some of the ladies to come and visit.  I am so sorry to hear what you are going through and sorry to hear your doctor say your "new normal".  I am a visitor from the Uterine board but I will tell you this:  Be kind to yourself.  Recovery takes longer than you think so don't get discouraged.  If you have any concerns - please call your doctor's office and tell them what is going on.  

Laura2051
Posts: 34
Joined: Aug 2016

What helped me was sleeping with an icepack between my legs for the swelling. After surgery I also kept a spray water bottle near the toilet so I could spray the area with cool water after voiding. (This water trick also helped after radiation) I'm 1 year post vulvar and lymph node surgery this month). I hope you ladies Kac salley and Littlefroglegs are doing well. When you are able to, get out for a short walk. This helped me. It is good pelvic floor excercise and good for the mind and spirit too. I walked every day after the surgery and believe it helped. Take it easy on yourself . When you have healed more you can gently rub some sweet almond oil or vitamin E oil on yourself. I will check back to see how you are doing. I hope this helped

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2901
Joined: Mar 2013

Dear Laura, thank you for sharing your tips for other ladies.  I do hope Kacsalley and Littlefroglegs check in, you all need it eachother and this forum continues to live.  

One year?  That is great!  I bet it is hard to believe you did everything you did.  I hope you did something special for yourself.

Laura2051
Posts: 34
Joined: Aug 2016

July 26th is the actual anniversary for my surgery. Don't know what I'll do. I mainly want to help and encourage other women who are going through this. I felt so alone and don't want others to feel like that. You are such an inspiration and kind voice to so many. Thank you! Keep up the good work you do!!

Shan420's picture
Shan420
Posts: 2
Joined: Jul 2017

Hi ladies. I to have had same experiences. I was diagnosed in fall 2013 and had no insurance. So it wasn't until July 29,2014 when I had my surgery at Ellis fischel cancer which is part of university of Missouri. I had a phenomenal female doc who took time to answer every question and concern I had. My surgery ended up being a modified radical vulvectomy. Ice packs were my best friend and saving grace. I had thought I could go back to work in a week and would be back to normal that fast too. I tried to hard to get up and around. I ended up having complications and at the time had someone who wasn't taking care of me at all. After 6 days unconscious and someone finally calling help for me. I was taken by ambulance to a local small hospital and then promptly put on a life flight chopper to mu hospital where I was in complete acute renal failure and totally septic. I don't remember much thankfully. But by the grace of god and my doc who did my surgery who came in and had to remove every stitch of the hundreds I had and this was 3weeks out from my original surgery.  And being on a ventilator and dialysis for 24hours. They brought me around and told me they had never seen anyone come in with kidneys that bad and in that short of time come out of it. I was in icu 3 days and up on the cancer floor another 5. And 2 blood transfusions I was released and my folks took me home to care for me. I had a cane to walk and my next goal was to heal up enough to start 30 radiation treatments for a spot that couldn't be removed surgically as it was to close to the anal region. So I could barely walk always felt clammy and weak on top of hurting like never before in my life. My radiation oncologist ended up being fantastic too. But not completely healed with a spot the size of a silver dollar I started radiation at the end of Oct 2014 and I had more pain from the burn than I had with other things associated with treatments. They even had to end up giving me a 2week break in middle of treatments because of that area that was not healed up before I had to start. But I finished the week before Christmas 2014. And the feeling of never being normal again was there for along time. But here we are a week shy of 3yrs out from my original surgery. And 2 and a half from being cancer free so far. I can tell you I've been through hell and back. But slowly I started feeling a bit better and I am not like I used to be but I don't expect to be. I am thankful to be alive and kicking. And as far as what my daughter jokingly called my frankenvagina :) it healed up better than ever and works just great minus a few things that are odd. Lol. But you have got to let your body heal at its pace. And I've got aches and pains in my hips and stiffness I never had. And I've been told by a doctor also its your new normal... I sleep with a pillow between my legs. And they radiated my lymph nodes as precaution so I've got problems with skin in my groin that gives me problems. And i use silvedine cream from my doc which is a lifesaver.  But time and faith and a positive attitude and support. Don't rush even though life fly's by. 

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