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.

36 thoughts on “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.

  4. You are a Badass Warrior Woman! Thank you for your courage! I have to be hopeful that your exposing your lack of care will change the care others receive in the future. Blessings and a warm hug to you.

  5. Oh my! This just made me so sad. I can’t begin to imagine the pain you have gone thru. Both the emotional, which is so real, and the physical….the loss of part of your body.

  6. When you are better. Meet with the chief nursing officer of the hospital or chief admin of the outpatient surgery area. Give all your complaints and make them stick. Anyone who goes through this surgery clinic is getting the same care, be the change you want to see.

    1. I 100% agree with Marion Hoffman (above) but please make sure your complaints and details are all written and mailed…someone has to log that letter in and it is more official (maybe officious, too?). I hope the burn cream they gave you is something similar to Silvedene cream? They gave it to our son after he had full-body/cranial radiation for relapsed childhood leukemia…we are a very light-skinned, light-haired family that burns pretty quickly. …that cream was a God-send (another mum recommended it). I am so sorry this happened to you. I have insisted on the HPV shots for both my remaining son and daughter…and I, too, wish they’d had this when I was a kid.

  7. This happened to me in the late 80s. Had outer labia cut off. Then they sent me to a more knowledgeable doctor and I was laser-burned inside and outside.

    After care was much like yours, meaning next to none. I found an aluminum foil turkey pan made a perfect site bath in aquarium salt water.

    I was prescribed an ointment for the burns and after a bit I had a hard time inserting it vaginally. I called the doctor to see if there was a possibility of the. vaginal walks growing together since it was all healing in there. They assured me that it wasn’t, just normal healing.

    When I went in fir a check-up they found it wasn’t the walls but the opening, the doctor proceeded to just rip it apart, no numbing, no analgesics.

    I did not have the fortitude ever to look at it all myself.

    I also plead with people to consider the HPV vaccine for not only daughters, but sons as well. Also know that your gynecologist might not have any idea how to treat your properly. If diagnosed, find someone that knows what they’re doing.

    Sex has been painful pretty much since these procedures were done.

    It’s shameful, hurtful and disgusting what they can do to you.

  8. I was in health care for 30 years, the last 10 as a Child Life Specialist. The emphasis was always on accurate education on what would happen, how it would feel, what to expect afterward…And it was a team effort from multiple disciplines. I am appalled at the lack of such care when it comes to adult care. What you experienced after your ablation was inhumane and to say unprofessional is a gross understatement to say the least. Writing your story is beyond brave. You have no idea how many others experiences you have validated regardless of diagnosis or experience. Your whole family was negated as well. I hope you can address this with the team who were associated with this experience. Surely there is a social worker or case manager you can contact. This staff is in sad need of the psycho-social approach to the patient and the family. Blessings to you as you continue to educate us all.

    1. I agree with Elizabeth. As a nurse (retired now), I am appalled at your lack of care and needed info re what to expect. Please have a talk with your surgeon. I hope this finds you recovered. Thinking of you.

  9. Thank you… juxtaposing good care with barely adequate care is so important. And this work deserves a much wider stage. I am so glad you have a tribe of folks helping with your healing. I send you tons of love and healing thoughts.

  10. You are amazing and brave. I cannot imagine the pain, discomfort, and embarrassment that you have experienced through this long episode. I admire your family and friends for all the help they have given you. I hope that healthcare workers will read your story and amend their behavior.

  11. Thank you for sharing your story. My heart aches from reading your experience and the lack of compassion for you. I am grateful for your strength allowing you to be vulnerable about your experiences with the world. ❤️

  12. I went through something very similar about twenty-some years ago. The first time, my female doctor used a laser and I felt no pain. She told me she would even remove my episiotomy scar and I would be “pretty & pink”. The second time it occurred, I had moved and had a different female gynecologist. The second time I was sent to a male surgeon who cut me. He cut a big hole in my body. It hurt to urinate. It hurt to sit. It hurt to stand. It hurt. I wasn’t even given a cream to use. I was so scared. Upon calling the doctor’s office, I was finally given a cream to apply along with reassurance that all was as it was supposed to be. I was afraid the wound wouldn’t close up and I would never be able to be intimate with someone again. This was one of the worst times of my life. I lived alone and had no one to help me. Plus I was too embarrassed to tell my gal friends what I was going through. To this day, I’m not sure if anyone knows how I suffered. I’m now seventy- one and still do not talk about t except when filling out forms inquiring about “previous surgeries “. I still feel shame that this happened to me all those years ago.

  13. Thank you so much for this. I am seeing my gyn for what I fear may be a similar situation, so coming across this was serendipitous.

  14. As a nurse I am appalled. You’re doing a great thing by telling your story. I am sorry your nurses didn’t do a better job with your care

  15. I had surgery in my groin area about two and a half years ago, and I could feel every ounce of your pain as I read through this. The shock of the wounds and seeing the mutilation to such an intimate area is something I will never, ever forget. It was the darkest time I’ve ever been through, despite the love and care from the small community I felt comfortable enough to tell. The lack of concern from medical professionals for my emotional well-being and the downplaying of what healing was “supposed to be” is also something I will never forget. Just know you aren’t alone, and shedding light on your experience will make it that much easier for someone else who may have to go through the same. You are so brave to advocate and bring awareness to what you are going through!

  16. You are amazing. I’m so sorry your doctors lack empathy and care. I am glad you’re healing well, and have a supportive family.

    I got Essure a few years back (before they did away with it) and the female surgeon said “oh, we just go in through your cervix and put the coils in your tubes, no problem, it’s very quick, you can drive, no pain killers or anesthetic needed.” That procedure was about a million times less invasive than yours, but it hurt like hell and I felt violated and cried afterward, and had to pull myself together for about a half hour in a dark room to drive the few miles home. I don’t understand why doctors, especially female ones, think that this kind of surgery is easy to recover from in any capacity.

  17. Cute t-shirt. Such a brave and good thing you did by writing this. Like others, I hope your sharing will extend to the providers who fell short. Gotta believe they’d like to do better. What an ordeal! Hope you are feeling much better.

  18. My eyes welled up with tears as I read your story. My heart aches for you, but I am so thankful that you shared your story.

  19. Very brave. I had a bladder surgery and received NO support or post op instructions. Got the same shitty treatment. Wasn’t told it would burn for the next 6 weeks and feel like a bladder infection that whole time. I was just told 2-3 days as well. Some doctors really suck. Oh and got the “ here’s your Advil” treatment too. Why can’t we treat women better? Ugh

  20. Your story is brave and heartfelt. I am suffering vulva lichen sclerosus a biological genital mutilative disease. Your story was shared on our support groups of about 30,000 women. We understand. Women’s genitals are often disregarded and worse our vulva is called vagina. We are working to create awareness and education so women’s genitals are respected and cared for. I am so sorry for the dismissive and disrespectful care you received. Your story resonates with us….

  21. Thank you. As we age, our labias are resorbed and disappear. I found out while I was in the stirrups. So sorry your experience was so uncaring.

  22. I hope someone from Evanston Hospital reads this! Their treatment of you was akin to malpractice. Kudos for writing your story. I’m so glad you are surrounded by love!

  23. It wasn’t my “procedure”. It was my later mother’s. She was in her late 80’s and her uterus was falling out–as happens to some of us. The gyn dr. offered a procedure that would close her vagina–a simple solution from a procedure stand point. Obviously, it could only be helpful if she didn’t “need” her vagina anymore. She opted for it. The procedure was a kind of “sanding” of the walls of her vagina so that they would then heal shut. Everything worked and my mother seemed fine with it. I, on the other hand, was deeply affected and cried while I waited for her to come back to recovery. I had travelled down that vagina. It just seemed to be such a huge closure of so many things. Then I thought I was overreacting. So, later that week I told my best friend who also loved my mother. Almost instantly her eyes filled up and she cried just as I had. We comforted each other. There is just so much brutality where vulnerability is the most and where our great power is kept. I have never told anyone but my best friend about this. Thank you.

  24. You are amazing and I am so grateful for you sharing your story. Sending love to you and your beautiful body. ❤️

  25. Yeah, I have had nothing but negative experience at Evanston hospital. Emergency has been horrible and same with surgery. My mom ended up with emergency partial bowel removal when they ignored her pain from an incarcerated hernia. And the surgeon was super condescending. She has had to have 3 more surgeries to try to correct the mess he made. She goes to Northwestern now and if she needs an emergency room she goes to St. Francis. I’ll never go to Evanston again.

  26. Wow i came upon this article by accident after reading your story i will have to go to my doctor and demand a pap i am fifty six i had ovarian cancer my gynecologist did an emergency hysterectomy and i believed all was well but i have had a itch that won’t go away almost like yeast infection but worse the pain is bad this has been going on for ten years and like you it is mostly on labia there is dischare coming out i have scratched so hard because it wont stop when looked at they just give me cream nothing helps and they tell me since everything was removed i dont need a pap i have also a chip implant on my breast so when i go back for breast exam that the lump they found is not growing. I will let you know how things go your story is probably going to save my life.

    1. If I can ask- what ended up happening? I am experiencing the same thing. It’s been 4 years and lots of cream. Been looking for answers! Please respond

  27. Thanks so much for sharing your experience. I’m sorry that you went thru that ordeal. Somehow, I found your article online not long after discussing my similar experience with a friend. While reading my medical record for a gyn procedure I noticed a sentence that stated my cervix had been lacerated and sutures were used to repair and the blood loss was less than 100 ml.. I was not advised of the issue and felt HORRIBLE. No one from the office called to check on me, which other drs have done and overall my female dr was uncaring

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