That Time I Wrote About My Labia

Sitting is hard these days. Last week, I had laser ablation surgery on half of my labia and perineum. Yup. Lasered right off. I didn’t know if I would share this. But the experience of my recovery has turned my ambivalence to necessity. Not for pity or concern (I am fine, loved, cared for and healing), but to share why it is so important to advocate the hell for yourself when it comes to your health, to change the fucking conversation we are having around treating the whole person and to push the case for the HPV vaccine. If you are unsure about vaccinating your daughters, I hope this read leads to a loud and astounding yes, yes, yes.  As you can imagine, writing about your labia is interesting? Mortifying? Kinda funny?

In March, I went for a pap. I was recommended to go even though it was in the middle of the new 3-year cycle. I was attending PT for my pelvic floor with the hopes of curing some minor pain and itching that no one could figure out. Those minor and just annoying symptoms had been there for 6 years. And I promised myself 2019 was the year to get my health annoyances sorted out.

That led to a bad pap, ugly HPV cells on my cervix, a LEEP (the process of burning off part of your cervix), realizing I got the special HPV strain 16 that has high chances of growing into cancer, an ER visit for bleeding and infection, and a really amazing OB-GYN that took me seriously.

(*Side note about HPV:  I was too old for the vaccine when it came out. The doctor told me it takes decades for HPV to get this far. I most likely contracted it in my mid-20’s. The thing is-you have had HPV. And so have you. And you and you and you and you. Yes, you. Pretty much anyone who has had sex has been exposed to HPV. I was exposed to a specific type of HPV and my immune system didn’t kick it like most everyone else. Mine stuck around. Waiting years to throw a big ass bomb on my cervix and labia. Also. The doctors don’t seem to know a ton about HPV. What they do see is an increasing rate of these types of cancers and cancer of the head and neck all related to HPV for those of us that were too old to be vaccinated.)

Following my ER visit, I went back to my OB-GYN, Dr. Pamela Goodwin, who was the same woman that saved my life after my delivery with Ginny. I went to see her after the hospital – I told her I just felt something was still not right on my pelvic floor. She never once downplayed my concerns. She listened. She took her time examining me and told me it looked normal. She saw one tinnesy tinnnnny spot that seemed irritated so she biopsied that spot. Sent me on my way. This was the end of June.

July 7, a Sunday and the day before my birthday, Dr. Goodwin called my cell twice. I answered on the second attempt to hear her concerned voice. The tiny spot was actually VIN-3, the stage right before it can turn into vulvar cancer. She sent me a referral for oncology and made me promise to call them on Monday.

The rest of the summer was filled with doctors scrapping, swabbing and cutting pieces and parts of my labia and perianal regions, trying to determine the extent of the shitty cells. Luckily, it wasn’t huge.

Sept 11, I went in for labia ablation surgery at Evanston Hospital. The oncologist walked in and told me “This will be the easiest thing I do all day”! I felt dismissed but I talked myself out of feeling that way. Feeling dismissed is a needy feeling, I am good at talking myself out of those. They put me under and I woke up with a deeply numb pelvic floor, sticky eyelids and mouth from where they taped me open and shut. Praise be, right?

All that, that’s not why I wanted to write this. That is not what this is about.

This is about the care I received after I hobbled out of the surgical unit. I left with one small tub of special burn cream and a prescription for Advil. Told to take it easy for a few days and could get back to normal after 2-3 days. That’s it. Done. As we made our way out of Evanston Hospital’s surgical unit, every staff person said “Heal Well’! Heal Well. Heal Well. Heal Well…..

You see, two weeks prior, I had a MUCH smaller surgery where they took tiny little biopsies of my perianal area. This was done at Glenview Hospital. It was there that I learned what cared for felt like. The nurses playfully argued over wheeling me out (they did not let me walk out). They sent me home with 2 giant plastic hospital bags filled with a sitz bath, those hot mesh undies, and pads to last me 50 days. They told me what to really expect and told me to be kind to myself. All because of a few tiny incisions. And because I am human and scared and confused and deeply vulnerable. They hugged me.

Fast forward to the time where they lasered off my labia. I came home and dozed the rest of the day as Dan watched me sleep. At bedtime, we realized I had to apply the first round of burn cream. I looked at him and he looked at me with a mix of fear and sadness. He said he would do it but was worried he would cry and mess it up. I get that. I totally get that. I knew I could it. I had to do it.

I felt clumsy, like an 11-year-old who was daring to look at her vagina for the first time. To peek behind the (meat) curtains. I used my phone as a mirror and figured out the right angle. The first things I saw were enormous black and purple bruises running down my inner thighs.

I gently pulled back the skin and saw The Wound. The large, deep, blood red and black singed open wound. It was if someone burned a large lowercase “h” on my pelvic floor. I was mutilated and swollen. “You can walk out, take some Advil, see you in two weeks” they said. They did not tell me that seeing my mutilated genitalia would make tears rush up from my toes, swell hot from behind my eyes. That my breath would catch, making me dizzy. Heal Well.

They did not ask if I have experienced any sexual violence or trauma. If seeing bruises on my inner thighs after being unconscious would trigger my brain to disassociate, severing me from my own body. Heal well.

They told me to use a sitz bath but provided none, so Dan ran out in a hurry to make sure I could keep my wound as clean as possible. Heal Well.

They did not say that using the restroom for weeks after would feel like the skin was tearing and burning all over again. They finally offered simple lidocaine cream after I cried and asked for something more than Advil a week later. Heal Well.

They did not explain how sad this is. How anger may show up when you go to sit at the coffee shop and realize there are no pads on the chairs. How the physical part is only one part. They did not care to ask or confirm that I had a small army of humans waiting for me, bringing me meals and grub hub gift cards and flowers and care packages full of labia plush toys and ice packs. Thankfully I did. Heal well.

The next morning, I received the perfunctory follow-up call.

A rushed nurse asked if I had any pain. I said I was still numb but was experiencing some big sadness and shock around the wound. She commented that my voice sounded okay and confirmed that I was in fact, not experiencing any physical pain. I confirmed. She robotically told me to heal well and hung up.

I am 10 days out. I am healing with burning and pain, sadness and anger and friends and family that love me more than humanly possible. I am healing by looking at my wound every day. I apply the cream without crying. I can do it without a mirror, as I have memorized the new ridges and rough folds. My fingers forge across the scorched landscape as gently as possible.  As I wince and contort, I welcome my new healthy skin to the fold, healing whole, not well.

5 Replies to “That Time I Wrote About My Labia”

  1. Oh, girl. Kudos to you for being so brave as to share your story. I know that could not have been super easy, but it means a lot. We are so painfully (pun intended) behind in our care of the whole body–physical but also emotional, physiological, and even spiritual parts, all being considered in “healing well.” We must consider all if we are to truly help in healing. ❤

  2. Mary Ellen – WOW. this is amazing. Thank you for writing, thank you for sharing. The care given – or NOT given, as the case may be – is what’s wrong with our entire medical system. There is no time to listen, to care, to follow through with something other than a robotic phone call.

    You are my hero for writing this. Thank you. Sending you love and peace and hugs. <3

    1. Thank you for your courage and inner strength to write this. Provides insight in what to look for in the medical facility and medical team. Prayers your way for a speedy and complete healing

  3. You are so brave and strong. I love you so deeply, my sister. Thank for telling this story. It’s important for us all to hear. Emery gets her second HPV vaccination soon, I’m happy to report.

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