My name is Mary; I live in
My story of Vulvar Cancer started in 1988 when I was 27 years old.
That is when my Doctor first noted on my chart. “White lesions post lips”. I had 2 abnormal pap smears. The Doctor noticed white spots on my cervix. He did a cryo (freezing) of my cervix. The Doctor did not treat or biopsy the white lesions. They were not bothersome to me. I had no symptoms. This Doctor retired and in 1989. I went to a new gynecologist who was recommended by a friend.
I always went to the Gynecologist for my annual exam unless it was required that I see Him more often. I never had abnormal pap smears other than the two in 1988.
The white spots (as I called them) would peel, like blisters. The skin that came off would be gray. Then the area would seem to heal. Other than irritation of the spot peeling and occasional spots of blood from that, I had no symptoms. No itching, No pain, nothing.
The Doctor never told me what these lesions were and he never biopsied them. He told me to take vitamin C, quit smoking, use castor oil pods, apply diaper rash ointment, do tub soaks for discomfort and it would go away. The spots or blisters would get better and seem to heal but they would always come back. Each time the lesions came back, they would spread or get a little bit larger as far as the area involved.
In 1990 the Doctor says that he “thinks” these blisters are genital warts and he would like to treat them because they do seem to be spreading. He applied a liquid acid treatment and sent me home. The acid caused my entire vulva and perineum area to be totally raw. When I called the Doctor’s office and asked if he could prescribe pain pills (because I was in pain and I still had to go to work) his nurse told me to do sitz baths for the discomfort.
OK, I had just been tortured, I wasn’t about to go back to this Doctor!
As the rawness began to heal, more blister-like lesions appeared. Some were white, some were grey, some red, and pink, purple, black and they were covering my labia, my vulva, around the perineum. Some were flat some were raised.
I called and made an appointment with a female gynecologist. I told her that I didn’t know what this was but I wanted to find out and I want it off of me! She did 3 biopsies. She was very surprised to hear that my previous Doctor never biopsied it. She called the next day to say that I needed to come in. I went in the next day and was told that all of my biopsies had come back as squamous cell carcinoma in-situ. I was told that they had made an appointment for me to see a gynecologist/oncologist the following Thursday.
I was rather calm while in the Doctor’s office but when I got in my car I broke down in tears. As soon as I got home I called my husband crying, told him that he needs to come home, I’ve got cancer! I commenced to drinking almost a quart of tequila, straight. I do not remember much after that except that I got sick. I never drank tequila after that day!
I saw the Gynecologist Oncologist on Thursday they scheduled me for surgery on Monday! I remember his assistant calling the operating room to schedule a “skinning”. I wasn’t sure what they meant by “skinning” but I recalled my Dad skinning catfish and that was not very pleasant.
I did all of my pre-op tests at the hospital as well as pre-admission that same day. I remember that it was February and it was cold. The x ray technician told me to lay naked on this cold metal table and she said “just relax”. I’m thinking yeah! right! How could anyone relax on this cold metal slab!
I had my pre-op instructions which included two days of preparation. First day liquids only, Second day clear liquids only and laxatives. The hospital was four hours away from home so I spent the night in a motel room to be at the hospital at 5 a.m.
The morning of surgery I arrive at the hospital. Several family members are there with me. We sit in the waiting area for 3 hours. I am feeling weak; I have not had anything substantial to eat in three days. I did not have a clue as to what I was about to go through. I’ve never had surgery before. I had read a little about the surgery on the internet. I found it difficult to read about. Just the ideal of most any surgical procedure makes me queasy.
As I am sitting in the waiting area, a million thoughts are going through my mind. Will I ever be able to have sex again? If they have to remove my clitoris, Will I ever have another orgasm? If I am unable to have sex, what is my husband going to do? He is going to have to get it somewhere…what if I can’t do it anymore? What is my vulva going to look like afterwards? Am I going to be disfigured? Will this cause my husband not to love me anymore? All of these thoughts are going through my mind.
I had to get up at 4 a.m. it’s now 9 a.m. and they haven’t even come to take me back. I start crying uncontrollably and sent my husband to see what they are waiting on or see if they forgot that I was there. Shortly after that the admissions lady finally called me. I sit down at her desk and I’m still crying. She asks me questions and then pauses, as I am crying she says “you know we can wait”. I said no, I’ve waited long enough. It’s not going to get any better! I do not want to come back!
From that time on, anytime I have a surgical procedure, I always tell them prior to surgery that I get very anxious if I have to wait! That way they do not ask you to be there as early! I don’t do early!
I finally get into a bed, they start the IV’s. I see the anesthesiologist who gives me something to calm my nerves and that’s all I remember of surgery. I woke up in recovery a little sick at my stomach and they were quick to give me medication to counteract that. They moved me into a room. I was on a morphine drip which I could control by pressing a button on a little control. I had a catheter, an IV, the plastic wraps on my legs for circulation. I spent two weeks in the hospital in very little pain. It was difficult to get comfortable in bed because they had taken skin off of my left butt cheek for the skin grafts. I couldn’t lay on my back, only on my right side or my stomach.
My surgery had been 8 hours long. I was in with the oncologist surgeon for four hours, then the plastic surgeon for four hours. They removed my labia on both sides, all the skin from my vulva from around the vaginal opening out to the hairline on each side and the perineum area. They did not have to take the clitoris nor the surrounding skin. They took biopsies continuously during surgery checking to make sure that all margins were clear. There were something like 156 biopsies tested. The plastic surgeon took an area about 4 inches x 4 inches off of my left butt cheek and used that skin to graph onto the vulva. My butt cheek was covered with a clear liquid bandage. I did have stitches that were holding the bandage for the skin grafts in place. They were removed 8 days after surgery and that was not a fun experience. Mainly because the Doctor would make his rounds at the ungodly hour of 5 a.m. and I didn’t wake up in time to hit my morphine drip before he started snipping stitches.
I had problems after surgery with pain during bowel movements. They had given me Imodium for two weeks in the hospital. They did not want me to have a bowel movement due to the skin grafts. Now I am home and very constipated. It was painful the first time. That pain was due to the skin grafts being sewn into my anal muscles. Ouch! The oncologist told me to take stool softeners’. I took a double dose of stool softeners’ and a double dose of Citrucel laxative daily throughout recovery. It made life much better! The Doctor told me that he would never let another patient go home without having a bowel movement first….Maybe that’s because I called him crying during that first episode.
With a little ingenuity I learned to bandage my butt all by myself. I could walk with my knees bent and my legs spread. When my husband made fun of the way I walked, I told him “If you had just had all the skin removed off of your testicles, you would be walking funny too!
After 2 months I could drive a car and was back to work. It was about 6 months before I could lift any weight or hold any type of weight while I was sitting. Sex was not a problem as long as you used plenty of lubrication and took it slowly. That happened at about 8 to 10 weeks post-op.
The lasting effects…..there is scarring but no one else can’t see it. Who looks that close at it anyway? Have you ever seen a truly pretty one? Have you ever known a man that turned one down because of its looks?
You have to keep a sense of humor or you will go crazy! That’s true in all of life! The most important part is “You have life”. Cancer is not a death sentence as many believe. There are many different types of cancers. Most vulvar cancers (some experts say all vulvar cancers) are squamous cell carcinoma. This is the slowest growing form of cancer.
1st Reccurrence:
9 years after my original surgery at age 36. I went to the bathroom and I noticed a tiny dot of blood on the paper after I wiped. My immediate thought was Oh no! It’s back. I made an appointment with my oncologist. Yes it was back. This time it was a very small (dime size) area on the left side just above my anus. It was on the outer edge of my original surgical margins. It looked like a common flesh colored skin tag. They scheduled me for outpatient surgery and were able to remove it all without graphs.
2nd Reccurrence:
In 2008 at age 47. Again, I noticed three tiny red dots on my toilet paper after I wiped. I then performed a self exam and there at the base of my vaginal opening, three very tiny flesh colored bumps. I made an appointment with my gynecologist and she did a biopsy. Her biopsy came back as VIN II, or moderate dysplasia. She referred me to a new gynecologist/oncologist as my original had retired.
He did 2 biopsies and they came back as VIN I or mild dysplasia. We waited 3 months to see if the dysplasia would go away on its own. 3 months later he took 5 biopsies they all showed VIN I or mild dysplasia.
Doctor gave me three options: laser surgery, Fluorouracil Cream or do nothing and watch it. I did not want to leave it and watch it turn into cancer. I had been there and done that. I didn’t want to use the cream for 16 weeks and be raw for 16 weeks. I had read on the internet and the Doctor was saying that laser surgery involved two weeks of extreme pain. The Doctor repeated my options and asked which I would prefer. I said “They all sound so lovely”. He laughed. I choose laser. I have been through worse. I can handle two weeks of pain.
On the day of surgery I was rather calm. The Doctor came in prior to surgery. I asked that he write my prescription for pain medication so that my Son could have the prescription filled. This would save a stop on the drive home. The surgeon said that he had decided to laser all of me. I said that’s great! Do what you have to do because I certainly do not want to be back in here next year.
They roll me into the operating room; slide me onto the operating table which is very narrow. The nurse puts a strap across my waist and says that she is putting a seat belt on me. I asked “Why? So I won’t run away!?” Everyone in the room laughed. But I really did want to run away! Then the anesthesiologist said that they were giving me something to relax me and I woke up in recovery.
This surgery was two hours long. Once I got into surgery he found more dysplasia than he originally expected. He did biopsies as well as the vinegar wash during surgery. He lasered my entire vulva areas from my vagina out to the hairline. He lasered all areas that were previously grafted, as well as a wide sweep on each side of my anus.
I was prescribed Vicodin 500mg for pain. I never needed more than 2 pain pills a day during the first 5 or 6 days. The 7th through the 9th day is when the extreme pain appeared and it was not what I refer to as “extreme”. I never needed more than 3 pain pills a day even during that time. This pain was due to the lasered areas beginning to peel. With ice packs, strict bed rest and allot of showers (every time you pee). You get more tired of taking showers and lying in bed than anything else. It’s been 17 days since my surgery and I’m sitting upright to type this letter and I am still smiling!
Being prepared before surgery is important. Having all of the supplies that you will need on hand makes it easier. Aftercare is essential to a quick recovery.
This is your time to heal. Everyone else can take care of themselves. Stay in bed with your legs spread (It needs oxygen to heal) and enjoy the time off from work!
Vulva skin care guidelines should be followed for the rest of your life. See your Doctor for any suspicious abnormal skin appearance such as color changes or bumps. Request biopsies be taken of anything suspicious. If you do not get the answers that you want, find another Doctor. Do regular self exams because you are the only person who can spot minor changes.
Mary
