I feel guilty that I’m scared to get pregnant, and I live with the weight of this guilt every day. I was officially diagnosed with endometriosis in 2021, and since I’ve had three surgeries, my most recent one excision surgery in May 2022. Each surgery had a rough recovery that involved several ER visits, follow-ups, and learning new normals. This disease has caused me to have an emergency appendix and gallbladder removal, and years of stomach sickness, pain, and intense medical trauma. Not to mention that for years of my life, I was teased and misunderstood for having “really bad periods”, a dismissal that proved to be untrue: really, something wrong inside my body. After all of this—my endometriosis diagnosis, my surgeries, I’m still absolutely terrified when every doctor I’ve seen has said, “Well, we checked your tubes, and everything seems open!”
So shouldn’t I be happy? I wasn’t. I couldn’t be. I don’t even have the emotional bandwidth to process this now. I want a family so bad.
How do I know everything will work? How do I know I’m NOT infertile? How do I know I am? Is it bad that I don’t even want to try because I’m scared of what will happen?
How It Started
I remember when my husband and I were about to get married, I had my first OB/GYN visit to get on birth control again. I took birth control from around ages 14-15 to a year after I graduated high school to control my extremely long, heavy periods. The general practitioner told me at the time that to continue the medication I needed to get an annual exam. An exam? I couldn’t even wear tampons without pain during insertion. The thought of it made me want to pass out.
I knew we weren’t ready to begin having children, so I scheduled an annual exam. I sobbed in my car before going in and took off the rest of my work day because I didn’t know what would happen. I walked into the clean, baby-plastered office and paid my co-pay. They led me to the back where I was instructed to change. I was violently shaking. I was so nervous I wasn’t sure what to say when the doctor came in. She could tell I was scared, but said, “This is easy. Just some pressure. No big deal.” She says it’s no big deal? Okay. I can try this.
She used the smallest size instrument they had and when inserted it, I screamed. I wanted to leap off the table. It hurt so bad. She stopped the exam and said she saw enough to be sure I was okay and I left. I called my fiancé and sobbed. I was such a failure. I couldn’t do it. The bullies, the teasing, everyone was right. I was a wimp. I bled for two days after and I wasn’t on my period. Thus began my literal five years of hell wondering what was wrong with me. Why was I so sick for so long? Why did everything get worse from what I had already experienced growing up?
My OB/GYN wanted to try three more times that year and the year after for a successful exam. “I have 12 year olds who can get through this!” she said. But the only successful pelvic exam I ever had was five years later, when I was under for surgery. I took prescription anxiety medicine and muscle relaxers to try and get through it. No luck. Eventually I refused the exams and asked if there could be anything wrong. “There’s no way anything is wrong with you. You couldn’t have endometriosis either. You’re too young.”
What now? Sex was painful. I still couldn’t wear tampons. My stomach hurt all the time. I was losing weight. Everything made me sick. My gastroenterologist didn’t know what was wrong. The scans were clear. ER visits were increasing. What was happening to me?
A friend asked how I was doing in 2020 and I cried telling her I didn’t know what was wrong. She said I should go to her OB/GYN because “she listens.” What did I have to lose that I hadn’t already lost? My dignity? Gone. My hope? Gone. What’s one more person to tell me I’m wrong?
So I decided to get a second opinion. And a third from another gastroenterologist. Both not knowing one other said, “I think you have endometriosis.” I was terrified. Endometriosis was bad. I didn’t know much, but I knew that.
I erupted in tears to my new OB/GYN when I was explaining how my quality of life was so low I didn’t know what to do. She explained graciously that she was very confident I had endometriosis and was horrified at the treatment I had endured for so long. She explained the diagnostic surgery and how she would remove any endometriosis she found. She also wanted to look at my vagina to see if there were any structural issues causing the pain with sex and my not being able to wear tampons. She also would perform my first annual exam while I was under.
So, in April of 2021, I went in for my first surgery. I cried as my husband patted my hand and assured me it would all be okay. I was working on my Ph.D. at the time and turned in a paper from the parking lot that morning. My brain was so all over the place.
I was terrified of them finding endometriosis, but also terrified if they didn’t. After my surgery, I woke up and my husband told me they found five large lesions on my colon and there was also a growth of tissue in my vagina that completely blocked half of it. I cried again, but this time the tears were from relief. I finally knew what was wrong.
My recovery wasn’t easy. I had extremely painful bladder retention where my bladder swelled to four times its regular size. This set me back in recovery and would be a reoccurring issue. The depression as my hormones leveled out was worse than any other times I had experienced. My subsequent surgeries were a surprise and just as horrible of recoveries. It’s not been an easy road.
How It’s Going
This year, after reflecting on my life and surgeries, my husband and I decided to start discussing our future with professionals in regard to building a family. So many people ask me if I’m infertile, and I never know what to say. I’m not not infertile. I don’t know for certain and I’m too terrified to try after all of these years.
What if I miscarriage countless times? Does that count as infertile? What if I have an ectopic pregnancy? Does that count? What if I do get pregnant, but my life is at risk at the end? What do we do then? The unknown after years of unknown makes my blood run cold.
Society, and even the medical field, wants us to prove our infertility, but what do I do? Who do I talk to? I’m a failure if I don’t try and, if I do and it doesn’t work out, a failure even still.
Endometriosis took more from me than just physical ability; it stole my emotional peace and I’m fighting to get it back. I am doing physical therapy, mental therapy, spiritual therapy—you name it. Peace has yet to arrive.
The facts stand that 1 and 10 women have endometriosis and between 30-50% of endometriosis patients will struggle with infertility. Of those with endometriosis, they are 2X more likely to need a C-section as their birth plan and most can expect some sort of complicated pregnancy. Complicated pregnancies run in my family as it is. Additionally, seeing that in my three surgeries, I have fallen into the “only X percentage experience this rare setback” each time, I am not confident in my body.
I write this essay to put forth a discussion about a hard topic: pregnancy and endometriosis. More specifically, the fear of pregnancy after years of pain, surgeries, and medical trauma. How do we move forward?
How do I move forward? Should I feel guilty or “get over myself”? Do I try?
Endometriosis is vastly under researched and largely dismissed by a massive part of the medical community. I would argue its dismissed by our culture in general. I had to find my latest excision specialist myself through social media. I had to advocate that my endometriosis had indeed returned after six months. “That’s really unlikely…”, they all said, but here I am. Third surgery in and still massive amounts of endometriosis was removed from my entire abdominal area. It was in the lining. It was missed because it was basically invisible the first time.
How are we helping those battling invisible illness with ourselves and even with our doctors? How do we fight, and much less comprehend, what we can’t always see? The community I’ve found online with other women who have endometriosis has done so much for me. I watch quietly in the shadows, not really posting, but feeling so glad there are others like me. I wrote this essay to seek out others like me with the same fears about pregnancy, too.
If you have these fears as well, you are not alone. We are not alone. We’ve been through so much. I hope this helps you feel like someone is there with you, holding your hand, also unsure about the future.
Kaley Martin is a senior broadcast producer/editor and doctoral student at The University of Alabama in Tuscaloosa, AL. Her focus area is in journalism and creative media with her research surrounding women in media and the sociology of content creators. She lives in Tuscaloosa with her husband, Zac, Director of Student Ministries at Riverwood Presbyterian Church (PCA). She was diagnosed with endometriosis in 2021 and continues to share her story in hopes it encourages others.
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*Patient stories submitted to EndoFound.org are the views of the patient and not necessarily those of the foundation. All testimonials are from real patients, and may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.