Advice on recovery from vulvar wide local excision

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I am having a wide local excision to remove vulvar squamous cell carcinoma on Tuesday. I am very nervous about the surgery and recovery and would love to hear from anyone that can advise me about what to expect for the recovery and what if anything you did to help the recovery process.
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  • funbeadgirl
    funbeadgirl Member Posts: 181 Member
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    wishing you the best
    Sorry to hear you have had to postpone your surgery but best to be healthy before your body has to recover from a surgery.
    Just a few ideas that were helpful to me when I had my vulvectomy, I used a squirt bottle(like a ketchup bottle) with warmish water in to flush area after using the bathroom. You can find them at grocery store or walmart in kitchen supply area.
    I also lived in nightgowns, and didn't wear underwear for a long time. If I had to go out, I wore yoga pants in 2 sizes bigger, so fabric would not rub on wound site.Or I wore a skirt and went commando.I had full pelvic radiation also at that time, so it was necessary for me to avoid contact with anything against my skin.
    During first week, I used an ice pack wrapped in a towel on the area to bring down the swelling, elevated leg on the side of surgery, and just moved slower and got lots of rest.
    Every one will have a somewhat different experience, but I found the recovery to be not too terribly bad. I am sure your doc will give you pain meds, use them but also take something for the constipation they will cause. I am sure your doc will go over a lot of this with you too, actually his nurse might be a better help to you since they are the ones that deal more with patients.
    Take it one day at a time, you will get through it. I am sorry that you have to deal with this, be strong and remember that cancer does not define you as a person,but will give you the opportunity to learn about yourself and you will see how many people care about you.
  • kohara1
    kohara1 Member Posts: 8
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    How are you feeling?
    I have been thinking about you and I hope you are healing well.
    I started back to work last Wed.
    I have fatigue after 3pm and sitting is still difficult. I work then come home and crash.
    Looking forward to feeling better.
    Take care
    Kohara
  • Littlejfroglegs
    Littlejfroglegs Member Posts: 3
    edited April 2017 #4
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    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

     

  • Nelle
    Nelle Member Posts: 1
    edited April 2017 #5
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    I'm in the same boat

    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.

  • cath5712
    cath5712 Member Posts: 2
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    Me too.

    I have VAIN II and took vaginal chemotherapy (effudex), which gave me chemical burns on my perineum and in the vagina.  I had vaginal and vulvar surgery May 26 2017.  Today it is Aug 2 and I am still in some pain.  My perineal area is unrecognizable and looks grotesque.  No one prepared me for what I have been through.  The doctor told me it would be like an epesiotomy.  Boy, was he wrong!  At first the recovery was very painful.  I'd say an 8 on the pain scale and I was out of work for 6 weeks because the sutures popped open  due to the weak damaged tissue in that area. Now the pain it is probably a 3 or 4.  I wear dresses or yoga pants, nothing tight or restrictive.  I take Advil and have to lay down several time throughout the day to relieve the pressure of sitting on the area.  I have a pillow I sit on in my car and at work.  Fortunately my boss allows me to work from home half the day so I can be in a comfortable position.  My experience was a nightmare.   Most of the problem was due to the Effudex destroying my healthy skin.  I am now going to gyn/onc specialist, which I recommend. My gyn doc did the surgery and I really do not think he was experienced with this at all. Has anyone had issues with Effudex (5FU).  I am single as well and this has affected my life in so many ways. :-(

  • cath5712
    cath5712 Member Posts: 2
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    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 hope you are well.

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

    Cathy

  • maryg_789
    maryg_789 Member Posts: 2
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    cath5712 said:

    Me too.

    I have VAIN II and took vaginal chemotherapy (effudex), which gave me chemical burns on my perineum and in the vagina.  I had vaginal and vulvar surgery May 26 2017.  Today it is Aug 2 and I am still in some pain.  My perineal area is unrecognizable and looks grotesque.  No one prepared me for what I have been through.  The doctor told me it would be like an epesiotomy.  Boy, was he wrong!  At first the recovery was very painful.  I'd say an 8 on the pain scale and I was out of work for 6 weeks because the sutures popped open  due to the weak damaged tissue in that area. Now the pain it is probably a 3 or 4.  I wear dresses or yoga pants, nothing tight or restrictive.  I take Advil and have to lay down several time throughout the day to relieve the pressure of sitting on the area.  I have a pillow I sit on in my car and at work.  Fortunately my boss allows me to work from home half the day so I can be in a comfortable position.  My experience was a nightmare.   Most of the problem was due to the Effudex destroying my healthy skin.  I am now going to gyn/onc specialist, which I recommend. My gyn doc did the surgery and I really do not think he was experienced with this at all. Has anyone had issues with Effudex (5FU).  I am single as well and this has affected my life in so many ways. :-(

    you're not alone

    I had surgery on July 7, and yes, any "real estate" I had in the perineum area is pretty much gone now. I understand how you feel--it's quite jarring to see your anatomy mangled. I will post my own entry later, but wanted to let you know you're not alone. Sorry you/anyone has to go through this. Hang in there... 

  • maryg_789
    maryg_789 Member Posts: 2
    edited August 2017 #9
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    Vulvar Cancer/VIN (NOT genital warts!)

    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. Smile

  • MsBunky
    MsBunky Member Posts: 1
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    Just joined today, am having same procedure...

    Hi there! I just found and joined this site today - I am having a wide local excision done on Nov. 6th after finding a mole on the tip of the pubic area, about an inch from the clitoris. My Family Doctor initally didn't think it was anything to worry about, and he removed it in his office, but the pathology report came back as Vulval Intraepithelial Neoplasia - as my Dr. put it "as close to cancer as you can get without it being cancer". 

    He referred me to a Gynacologist for further treatment, I met with her and we discussed next steps. She has booked me in for surgery for a wide local excision under general anesthetic, and that will be happening on Nov. 6th. I'm not overly worried about disfigurement as it's just the fatty part of the pubic area above the clitoris and urethra that she'll be working on, but she also indicated she'll be doing a comprehensive internal examination as well. I have been in surgical menopause since 2007 and on HRT for the last year, but sex is painful still due to vaginal dystrophy and there is often a bit of blood after intercourse, no matter how much lube we use. My husband is extremely well endowed, but I didn't think that would be an issue if we were using lube as it hadn't been a problem in the past. 

    I have a number of major health issues in my life that cause me chronic pain and fatigue, so this just wasn't something I needed. I want it dealt with and then to be done with it and I'm sure you're all the same. I look forward to sharing thoughts and ideas with you as we go through this together. I'm pretty much an open book so if you have any questions at all, I'm happy to answer them. I also blog at pamelajessen.wordpress.com/blog

    Hugs to all!

    Pamela

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,385 Member
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    MsBunky, I know everything

    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.

  • Jserv280
    Jserv280 Member Posts: 1
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    Ms Bunky VIN III surgery

    i just had the surgery a week ago, after a couple of biopsies on some lesions in the perinum and labia showed they were VIN III, non cancer cells! the same as your diagnosis. I was scared as I thought it was going to be very painful. I was prescribed pain meds and antibiotic, which I have now completed and only take iboprofen if needed. The best advice is to use the little peri bottle to wash after each time you use the bathroom and the hairdryer on cool to keep the area dryer. Going commando as much as possible helps and baggy pants. I also took a Miralax a couple of times as the pain meds tend to constipated you. Also found the neck pillows gave me some support on my bottomh too, but most times I would lay on the couch or stand and walk. 

    i have found some bleeding this last couple of days that have been sore, but otherwise I am fine. The stitches look great. I first looked earlier and I was very swollen. Checking in with my Gyn oncologist on Thursday for a follow up. If my Gyn had not decided to take a biopsy, my story could have been quite different. Good luck..it happened so fast for me.

  • Womenfly
    Womenfly Member Posts: 2
    edited November 2017 #13
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    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!

  • Purplebunny
    Purplebunny Member Posts: 2
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    Discoloring?

    I had a vulvar wide local excision performed on 10/23/17 with the stiches removed on 10/30/17.  On approximately 11/2/17 the stiches popped out.  (I say approximately because it is so puffy and swollen down there and its difficult to discern exactly when the stiches popped out).  Has anyone else experienced this?  I examined my post surgery self with a had mirror and it is horrific!  Is the skin supposed to be greyish/yellow?  (The new skin that is?)  I apologize for all the questions...we live in a rural area and it snowed today.  I'm waiting to hear back from local gyn to see if they can remove this sucture or should I travel 200 miles on snowy roads to my new gyn who correctly identifed the cancer and have the sucture removed.   I think removing a sucture could be successfully handled by any gyn?  Please respond, I'm nervous and concerned...

  • Purplebunny
    Purplebunny Member Posts: 2
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    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 didn't expect this - response

    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. 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,385 Member
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    Discoloring?

    I had a vulvar wide local excision performed on 10/23/17 with the stiches removed on 10/30/17.  On approximately 11/2/17 the stiches popped out.  (I say approximately because it is so puffy and swollen down there and its difficult to discern exactly when the stiches popped out).  Has anyone else experienced this?  I examined my post surgery self with a had mirror and it is horrific!  Is the skin supposed to be greyish/yellow?  (The new skin that is?)  I apologize for all the questions...we live in a rural area and it snowed today.  I'm waiting to hear back from local gyn to see if they can remove this sucture or should I travel 200 miles on snowy roads to my new gyn who correctly identifed the cancer and have the sucture removed.   I think removing a sucture could be successfully handled by any gyn?  Please respond, I'm nervous and concerned...

    purplebunny, I am a visitor

    purplebunny, I am a visitor from the Uterine board and wanted to welcome you. It can be a little quite here sometimes, and I know what it meant to me to have women telling me what to expect when I was going through everything.  I would say vulvar cancer is rare, but there sure seems to be more of you ladies popping up on here and I wish people would try to come back more often.  

    Please be kind to yourself.  You have 'sisters' out here in the gyn cancer area. 

  • Kelli K
    Kelli K Member Posts: 1
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    Getting this done on the 12/23

    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. 

  • Laura2051
    Laura2051 Member Posts: 34 Member
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    One year survivor of Vulvar cancer

    July 2016 I had a radical vulvectomy and my lymph nodes removed on both sides . I was stage 4, squamous cell carcinoma. The cancer escaped my lymph nodes. Using a peri bottle after voiding did help. Ice packs, jojoba oil or sweet almond oil, aloe vera. Wearing skirts and going "commando" as others have done. A positive attitude and prayer both were essential in my healing. I also walked everyday. Even with a catheter in for 2 weeks and my lymph drainage bags I made myself walk. Walking is wonderful pelvic floor excercise and it gave me a lift just to be outside. Try to have a sense of humor because laughter is good medicine. I remember waiting in line at a gas station to use the bathroom with the catheter bag on my ankle. I told the lady in front of me, I guess you know I don't have to pee! Bottom line ( no pun) you can do this! All of you women are stronger than you think!

  • Womenfly
    Womenfly Member Posts: 2
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    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!

    UPDATE: I just had my laser surgery on 1/9/2018

    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
    hope4everyone Member Posts: 6
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      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.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,385 Member
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      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

    hope4everyone, thank you for sharing your experience.