VIN III recurrence

Hollies said:

Just diagnosed with VIN3 and waiting for surgery date

any info, advice or suggestions would be appreciated.

Hi! have you had your surgery? How are u feelin? I had a laser ablation to remove vin3 in septe of 2015.

I remember how scared I was. The recovery wasn't that bad! I have a toddler and can't jus lay on the couch! 

I will se another oncologis on 3/3 because it is back! my gyn sais that I will probably need another surgery, so I'm getting mentaly prepared.

I'D BE HAPPY TO BUCK UP FLAGGING SPIRITS. I AM GOING TO SE THE GYN/ONC THIS MONTH. HAVE HAD BAD PAP TESTS AND VIN FOR 6 YEARS, THEN TOTAL HYSTERECTOMY W PARTIAL VAGINECTOMY. NOW, 9 YEARS SINCE THIS FRIGGING ORDEAL BEGAN, I HAVE A LESION ON MY R LABIA THAT'S VINIII. NOT HAPPY AT ALL. 

FOR THOSE OF YOU WHO'VE HAD LABIAL/VULVAR SURGERY, IS IT VERY DISFIGURING? 

I'M 65 AND HAD A GREAT SEX DRIVE UNTIL THE HYSTERECTOMY WHEN I WS 62. I DOUBT I'LL WANT ANYWAY IN THE SAME ROOM W MY NETHER PARTS EVER AGAIN! I'M VENTING. I'M WHINING! ANY ADVICE?

AND, I WILL BE YOUR FRIEND AND LISTEN TO YOU, FOR SURE. GEORGEIE

I am new to this site, but certainly appreciate all of your comments.  I have had lichen sclerosis for 7 years with no real problems.  However a recent biopsy diagnosed VIN3 and in a couple of weeks I will have a more extensive biopsy.  I am certainly scared about the results.....and I am thankful I have you ladies to turn to.  Thank you.

TJperdue said:

I totally understand your

I totally understand your frustration. It's so hard to find someone to talk to who is the exact spot that you are. Treatments vary because of location of cancer and also the oncologist you have. I am having my second surgery this Monday. I have researched so much and still don't totally understand. My first surgery was to take off half my left labia because of pre cancerous cells but 3 days later pathology report showed actually cancer in all margins and a tumor (invasive cancer). My next surgery is going to be tough. I will be so glad to get it behind me. please continue to educate yourself but wait until you see oncologist so she can go into more detail which will make it a bit easier to research things 

I have read so many situations that people have gone through.  Since this is a couple of years since your post, I was wondering how you are doing.  I’m scared of what’s next.

thanks for your time

LD90 said:

VERY SCARED, need advice

I am so thankful I found this site and women who have experienced what I am going through. I haven’t talked to anyone about my diagnosis except for my boyfriend. I feel embarrassed and ashamed. I had a organ transplant so I have to take daily immunosuppressants that basically kill my immune system to keep my body from rejecting my new organ. Although I am very grateful for my transplant, my body is unable to fight the hpv. I have been diagnosed with VIN3 and CIN2. I have a doctors appointment to discuss surgery on both my vulva and cervix. I am currently trying Aldara but not seeing very much improvement on my vulva. The VIN is located right at the opening of my vagina. Please, can anyone give me advice? Help me understand what I’m in for? I’m 28 years old and dont have anyone to talk to about this. Am I going to be able to have a healthy sexual relationship with my boyfriend after this? Will I ever be able to have kids? 

I’m 38 and I just had the same thing done, cervical cone removal and wide local incision of the lower vulva. I was also on an immune suppressant for MS (I’m crazy healthy though) which delayed the healing process. My surgery was July 3, I’m still healing, am in a relationship and can’t have intercourses yet. Maybe another month? I wish I had positive things to say about the experience, but the entire thing broke me. if I could offer any advice it would be to know that recovery will take time, give yourself grace to heal. Healing may be boring (a month After surgery I laid in bed for a week with a blow dryer and a fan and gauze constantly dabbing in an effort  to try to keep the area dry). Know that it’s a marathon to recovery, not a sprint. My Heart hurts for you. I have a follow up on feb as the vulva skin they removed had precancerous cells on the outside. If o have to go through this again, I think they’ll have to admit me! This experience completely broke me:(

Hi everyone I was diagnosed with Vin 3 on my clitoris last year but was unable to get to the town that my laser surgery was to be done at. I'm finally able to do it and the surgery is booked for Oct 10th. I'm really scared because it's not just on myclitoris anymore. I can see white, raised areas in a couple of other spots and the very inside of my vagina on the left side is red looking. I read so much about how often it comes back and with the trouble I had just trying to get out of town for the one surgery, I can't imagine being able to get it done regularly.

My question is about pain meds. Both my gynecologist and oncologist said the recovery would be "very painful" I can imagine it would be considering my clitoris will be completely burned. I don't even want to think of how that will be. I"m sure they'll prescribe pain meds but I'm paranoid of them. I don't like feeling doped up and where I can't think straight. It throws me in to a panic attack. Do the pills make you feel high or do they just take away the pain?

Hi Carole,

I was recently diagnosed with VIN2 And have surgery tomorrow 7/25/22- Wide Excision of vulva lesion CUSA. There is little to no information and not much guidance or compassion from the medical community. Two days before my 51st birthday. I am trying to think and prepare for recovery as if it will be an episiotomy. I have never had kids so this is all pretty new. I have several dogs but do have my husband at home. I bought a few things on Amazon in hopes of preparation and I can send you those links. All I can say is, I will know more tomorrow. I have been told there is a 30% chance of recurrence but with my research, this is a conservative number. I have left things in God’s hands. 🙏 I can come back later and give an update.

hugs,

Laurie

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When you can, let me know how you are doing!!! Having the surgery BEHIND you is step 1!!!!

Best!

Carole