After 26 Years With a Uterus, an Uncertain Path Ahead

After 26 Years With a Uterus, an Uncertain Path Ahead

By: K. Danielle Karas

It takes nine months to carry a child, exactly how long it took me to realize I never will.

On December 28, 2017, two days after my 26th birthday, I underwent a laparoscopic procedure to remove an endometrioma, or blood-filled cyst, on my left ovary. What I thought would be a simple procedure ended up changing my life forever.

During the surgery, my doctor found endometriosis on almost every organ from my stomach down and had no choice to not only remove the cyst but my left ovary with it. I woke up in recovery and learned I had Stage III Endometriosis. My doctor prescribed Lupron, explaining it would rid my body of the endometriosis growths she could not safely remove from some of my more "delicate" organs.

Lupron landed me in pseudo-menopause and caused a plethora of side effects I would not wish upon anyone: severe depression, suicidal and more thoughts of self-harm, migraines, joint pain, night sweats, and speech and memory problems, to name a few. I was prescribed two rounds of the shot, lasting three months each, but after that hellish introduction, I waved a white flag on round two.

In August, the shot finally started to wear off.

A hysterectomy is not a cure for endometriosis—there is no cure—but there was a possibility of the surgery offering me relief. I knew the implications of having this procedure done, I also knew the risks, but I was desperate for relief.

Without Lupron, I was at an impassé. I am unable to take birth control due to neurological issues, so what remained of my endometriosis was left unmanaged. The pain made it impossible to live a normal life…to live a life at all. I had to change my major from English Literature to Liberal Studies and switch to online classes at Arizona State University because I could no longer handle walking or sitting for long periods of time during a flare-up, and many of my remaining English courses were only offered on campus. I might as well have been bed-ridden.

I needed to do something.

I had exhausted all options currently known to science as “treatments,” except excision surgery, which I was not a candidate for because my insurance wouldn't cover it. And for a college student with a chronic illness, who was barely able to hold down a part-time job, the eye-popping out-of-pocket expenses were well beyond my reach.

This left me with only one plausible option if I wanted any chance at a normal life: to have a hysterectomy. A hysterectomy is not a cure for endometriosis—there is no cure—but there was a possibility of the surgery offering me relief. I knew the implications of having this procedure done, I also knew the risks, but I was desperate for relief.

Of course, surgery of this nature for a 26-year-old is not routine, and very hard to get covered by insurance. I had to jump through hundreds of hoops, see many doctors, and fight tooth and nail even to be considered for a hysterectomy. I gathered letters of medical necessity from a psychiatrist stating I was of sound mind to make a decision of this magnitude; a neurologist, to explain that birth control and Lupron were not viable options for me; and from my OB-GYN who agreed, unfortunately, a hysterectomy was my best option, the next step in my journey to feeling like me again.

I was thrilled when the insurance approved the surgery. My mother and I did a little victory dance and high-fived. Speaking of my mother, I was incredibly lucky to have the support I did through this process. My partner and family had complete trust in me to make this decision.

In the month leading up to my surgery, I went through emotions I’m not sure there are words for in the English language. I was in excruciating pain and trying to wrap my mind around what had transpired and what lies ahead. I was set to graduate from ASU in December and had just received a promotion at work when I found myself waiting anxiously by the phone to learn the date of my total hysterectomy.

Now, standing at the precipice of my hysterectomy, I had moments of feeling as if I wouldn’t be a woman anymore, a thought that threatened to send me back into the stormy depths of depression.

You may wonder, did I want children? I wasn’t a girl that loved dolls (I was more a dinosaur fan, to be honest), but, I still kept my future kids' names picked out. Zane and Lydia.

It isn’t that I did or didn’t want to have kids, I just figured that one day I would, because that’s what people do. They grow up, get married, and have children. Now, standing at the precipice of my hysterectomy, I had moments of feeling as if I wouldn’t be a woman anymore, a thought that threatened to send me back into the stormy depths of depression. Oppositely, I would have moments of extreme strength, where I felt empowered to overcome.

My hysterectomy was scheduled for September 28, 2018, exactly nine months to the day of my previous surgery and diagnosis. I decided I was going to be brave. I was no longer going to be a victim; I was going to be a warrior. I went to social media to share my story for the world to see, instantly making one of the most private parts of my life, public. Best. Decision. Ever.  The outpouring of love and support was overwhelming, but what touched me the most were the hundreds of messages I received from women in similar situations. Some were close friends, others strangers who had been suffering in silence, too afraid of what people would think or say. I felt my heart swell. They told me I gave them the courage to speak up, talk to their doctors, explain the pain to their loved ones, and most importantly, feel less alone.

My right ovary was not removed during my procedure so that my body can continue to produce its own hormones; this also gives me the option to harvest eggs should I ever want biological children. Though this is an option, my partner and I plan to adopt and offer a beautiful life to a child lost to the system.

As I write this, three weeks post-hysterectomy, I confess I haven’t had a lot of experience yet with what the rest of my life is going to be like. When I go to doctor’s appointments, and they ask if I am pregnant, or could be pregnant, the conversation that follows is always awkward. I think more so for them than for me. People never know the right things to say. I don’t blame them; I wouldn’t either. Some situations in life are like that, and what I’ve told my loved ones is that you don’t have to say anything, just continue to love me as the same person I was three weeks ago.

There are nights I lie awake questioning who will take care of me when I am old or all the things I will miss out on not being a mother. Thankfully, a friend had soothing words to share:  “I want you to know you can still be a mother if you ever choose in life. Being a mother doesn’t mean you have to birth your child, motherhood is a sacred title given in so many different and beautiful ways.”

She's right.

I may be 26 without a womb, but I don’t need a womb to be a woman. And I may be 26 unable to carry a child—but that doesn’t mean I can’t be a mother.

 

Kayla Danielle Karas lives in Mesa, Arizona with her sister, boyfriend, Matt, and two cats; Sessa and Khaleesi. She hopes to become an English teacher and continue to advocate for endometriosis patients, in hopes she will live to see a day young women won’t need to undergo a hysterectomy, as she did, at 26.


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