Advice on recovery from vulvar wide local excision

I'm a 40 year old, single mum to a beautiful, almost 5 year old boy. I had an operation for VIN iii on Monday, so I am 6 days post op and still in a fair bit of pain. I had quite a bit taken; from bottom of vagina to 1 cm before anus. I'm bruised and sore, although I have good pain melds, it doesn't really take all of it away. I'm feeling pretty emotional about it all, previously I felt fine about having the surgery(I have the best surgeon in Australia who specialises in this area) but now I'm nervous that the results will come back as cancer. I am fortunate that I have a good support as a single mother, my family have stepped up while I'm healing.

Littlejfroglegs said:

Post Vulvar Excision surgery

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

 

I'm sure at this point you must be healed.  I hope after the swelling went down that you looked good as new. 

Cathy

Recommendations for anyone recently diagnosed:

In addition to asking lots of questions:

1. Prior to surgery, Ask about "Back-up" plan. Originally my surgery was supposed to be excision on left side, laser ablation on right side. Apparently, the area to be cut (specified radius from site of cancer) encompassed the area that was to be lasered, so everything ended up getting cut out; no laser. This was a "surprise" to me--see next point...

2. Ask your doctor to "draw" the proposed incision on you, prior to surgery. Wish I had done this. Although he verbally described the surgery, I guess I didn't really comprehend that he would/could take a different course while I was already unconscious on the operating table.

3. Record conversations w/ doctors if possible. Easy to forget stuff that was said. Ask if it's okay if you want, check your state laws for recording stuff, whatever;)

4. Get specific post-op info! I did not even know Dermabond was used on me until I called the next day and spoke to a "doctor on call" (it was a Saturday). I knew subcutaneous (dissolvable) stitches would be used, but NO idea Dermabond was going to be used. I found this to be a HUGE mistake/error? Very painful when it is applied to your pubic region. No idea how to "care" for this. (I'm still kind of angry about that)

5. Sounds weird, maybe, but I took pictures of my "area" before the surgery and every now & then afterward (to check healing, etc.) Seems like a large part of VIN and vulvar cancer is "skin checks" for discoloration, new developments as a course of "follow up" treatment? I know it's difficult for ME to remember what it looked like, let alone a doctor keeping track.

Hope those help. Here's my story-- maybe to help other women who aren't sure of what to do, and so other women don't feel all alone in this. It's scary, and a bit traumatic.

I had very small bumps? ripples? near the bottom of vaginal opening, on my inner labia for 6? 7? years. They were less than a pinhead size and brushed off by a previous gynecologist as just "wear & tear". I'm 47 now, and not sexually active for the last 2 years, gave up seeing gynos/doctors as I feel great, generally. One of these bumps starting growing--came to the size of half a pea in about 3 months. Went to see  a gyno and they convinced me it was genital warts!  Hahahaha...even though I explained my history AND the HPV test was negative.

They removed the large one & a few of the small ones--biopsy showed cancer. Off to the cancer doctor!

The 1st one I saw examined me, said she needed to have my biopsy "re-examined" for more precise details (???).  Next thing I know, I'm getting a call from her nurse to schedule surgery. I had to make an appointment to speak w/ the doctor as I had no info-- what type of cancer, what stage, etc.  NOTHING.

Doctor did not seem interested in discussing options, but I found out the large one was Stage 1A cancer, and the smaller ones were VIN 3.

Found a different doctor--supposedly the BEST in my area for this type of cancer.He explained a lot more than the 1st one, answered all my questions, but I think it boils down to "you don't know what you don't know"...hard to come up with questions when there aren't many "real people" down-to-earth resources.

I had a "radical wide local excision" on July 7 this year, and a month later, I am still trying to heal. I wish my post-op appointment had been 1 week after, not the 2 weeks they gave me. Stitch broke & I also now have a "skin separation"--doctor didn't seem concerned when I saw him 2 weeks ago today, but I don't think it's healing correctly. I'll see him again next Tuesday/week from now.

Anyway, I have very little support (no family nearby, no husband/boyfriend) and I feel that with this type of cancer (vulvar) being uncommon, there aren't enough resources/voices for the patients going through it.

If you've read this much--thank you. Again, I hope this helps others. 

MsBunky, I know everything has to be moving so quickly.  Please make sure you are working with a GYNECOLOGIC ONCOLOGIST.  They are gynecologists who take additional training to treat cancers 'below the belt'.  

I am sorry I can't give you any insight on this particular type of cancer - I am a visitor from the Uterine board and we tend to check in on our other 'gyne' sister warrirors.  I hope some of the lovely ladies chime in.

How and when did you learn about your cancer?I thought I had a urinary tract infection because I was experiencing burning and stinging. I had a urinalysis done and it was normal, so I went to my GYN doc who noticed a lesion on my perineum between my vagina and anus. She asked me “how long have you had this?” I had no idea since I don’t look down there. I had a normal PAP smear and exam in mid May of this year. She did a biopsy which revealed I have high grade squamous intraepithelial lesion moderate to severe dysphasia/ VIN 2-3. She has referred me to a GYN/Oncology doctor who I cannot see until 12/1/2017! I’m really trying not to freak out but I can’t help it. My GYN doc said I will need to have surgery.What types of treatment(s) have occurred?I expect I’ll need a wide margin excision of the area but since I haven’t seen the surgeon yet, I’m not sure. Can someone who has had that surgery tell me what to expect? Also, did you have to have any testing before your surgery to see if it has spread?What else would you like to tell us?I’m just plain scared!

Womenfly said:

I didn’t expect this!

How and when did you learn about your cancer?I thought I had a urinary tract infection because I was experiencing burning and stinging. I had a urinalysis done and it was normal, so I went to my GYN doc who noticed a lesion on my perineum between my vagina and anus. She asked me “how long have you had this?” I had no idea since I don’t look down there. I had a normal PAP smear and exam in mid May of this year. She did a biopsy which revealed I have high grade squamous intraepithelial lesion moderate to severe dysphasia/ VIN 2-3. She has referred me to a GYN/Oncology doctor who I cannot see until 12/1/2017! I’m really trying not to freak out but I can’t help it. My GYN doc said I will need to have surgery.What types of treatment(s) have occurred?I expect I’ll need a wide margin excision of the area but since I haven’t seen the surgeon yet, I’m not sure. Can someone who has had that surgery tell me what to expect? Also, did you have to have any testing before your surgery to see if it has spread?What else would you like to tell us?I’m just plain scared!

I had the same diagnosis as you in September 2017, and had the wide excision performed by a gynecological oncologist on 10/23/17 with stiches removed on 10/30/17.  The procedure took about 30 minutes and went well.  The only laments I had was that it was almost impossible to sit the first week - so lots of standing and lying down.  The doctor told me to think of sitting like you would in a 'beach chair pose".  They provided me a peri bottle for using the restroom and lots of "air' drying.  Some bleeding the first day, and then just a little over that first week.  The pain was not too bad actually and I never took the pain pills, just ibuprofen.  The only issue I had is my current one - some stiches have popped out.  I've read that they can't re- stitch that area and that the body continues to heal on its own. 

Hi....I am new, but not new to VIN.  I was diagnosed in March of this year and had an ablation done.  It seemed ok, but got irritated over the summer.  I went back and he said it was fine (I didn't think so).  I went to my 6 month follow up and I was hoping that he would do a biopsy because I knew something was wrong.  He did and it is back so I am getting a wide local done to get it out (for good I hope).  I am not nervous, but I am wondering about healing and how it will work after??  Can anyone offer advice on functioning after (going to the bathroom, getting a shower, and being active).  I am happy that I am getting it taken care of. 

Womenfly said:

I didn’t expect this!

How and when did you learn about your cancer?I thought I had a urinary tract infection because I was experiencing burning and stinging. I had a urinalysis done and it was normal, so I went to my GYN doc who noticed a lesion on my perineum between my vagina and anus. She asked me “how long have you had this?” I had no idea since I don’t look down there. I had a normal PAP smear and exam in mid May of this year. She did a biopsy which revealed I have high grade squamous intraepithelial lesion moderate to severe dysphasia/ VIN 2-3. She has referred me to a GYN/Oncology doctor who I cannot see until 12/1/2017! I’m really trying not to freak out but I can’t help it. My GYN doc said I will need to have surgery.What types of treatment(s) have occurred?I expect I’ll need a wide margin excision of the area but since I haven’t seen the surgeon yet, I’m not sure. Can someone who has had that surgery tell me what to expect? Also, did you have to have any testing before your surgery to see if it has spread?What else would you like to tell us?I’m just plain scared!

my GYN oncologist advised me to have a laser procedure using a CUSA device.  I had one area that had already been biopsied as VIN 2-3.  During the surgery, she found another area and lasered it as well.  So far my recovery has not been too bad. I had a partial vulvectomy via CUSA.  I use a squirt bottle to dilute my urine so it doesn’t sting and it also helps keep the area clean.  I am taking stool softeners. I use a hair dryer on cool setting after I use my squirt bottle to dry everything.  I don’t have any stitches.  I’m waiting for my path report to come back to see if anything further needs to be done.  I have a follow up appointment in a week now to check and see how I’m healing.  I wear no undies and just dress type things for now.  No pants.  I’ll have to be watched closely because these things can recur.  I’m trying to stay positive and concentrate on healing.  It really wasn’t too bad for me.  Hang in there and stay positive.

hope4everyone said:

  I had BCC of vulva and my

  I had BCC of vulva and my excision was wide, but not as extensive as some here.  The removal was done in the office under local and the doctor warned me that I would need more surgery if the margins weren't clear.  Luckily, they were and it was removed with the initial op.  It took about six weeks to heal for me.  I dabbed lidocaine on it for pain control and the sititches eventually disappeared after about three/four weeks. It was tender and I soaked in plain warm tub water.  I noticed if I leaned against a counter, I felt a twinge because of the cut nerves down there.  All of that eventually eased.  The doctor checked the site after eight weeks and it  was hard to see by then.  I noticed it healed quickly between weeks five and six.

hope4everyone, thank you for sharing your experience.