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It Wasn’t All in My Head: Megan Highberger’s Endo Story

It Wasn’t All in My Head: Megan Highberger’s Endo Story

Emergency room visits, doctors’ appointments, missed work and school, infertility, passing out and vomiting from pain, heavy bleeding, pelvic floor dysfunction, ultrasounds, procedures, digestive issues, medications, misdiagnoses, and feeling crazy. These examples are my normal, but let me start from the beginning. I got my first period at 12 years-old. They were always on time, relatively pain-free and didn’t disturb my life. However, around 16, I started noticing my flow was getting heavier, and the cramps were more frequent and painful. At 17, the pain increased to the point that I couldn’t move. I was missing school, vomiting from pain, and bleeding through pads and tampons. My friends weren’t experiencing the same; I felt very alone and no one could understand the pain I was feeling. As I lay there on the bathroom floor in agony, I knew something was wrong. My mom had similar pain when she was younger and she took me to her OB/GYN my junior year. I remember thinking “finally I’ll get some relief.” She prescribed me birth control and told me that should help with the symptoms; it did the bare minimum. A year later I told my doctor some of my symptoms had improved, but still in horrible pain. She prescribed another birth control and prescription strength naproxen. The same results; this cycle continued for years. I would make trips to the emergency room, phone calls to my doctor, ultrasounds. I was told the same thing every time: “you just have bad period pain.” 

Things started taking a turn for the worse my junior year of college. I had learned to manage the symptoms, usually in an unhealthy way. For example, taking double the recommended dose of naproxen. However, that started to not help and I would find myself skipping classes because I couldn’t get out of bed. At this point I had tried multiple birth control pills, doses, continuous, non-continuous. I felt as if nothing would ever help and this was just my life. My senior year is when my bowel symptoms got worse. I told my doctor and she sent me to a GI surgeon for a colonoscopy. My gynecologist assumed I had IBS and that it had nothing to do with my painful periods. I had the colonoscopy and it was clear. The GI doctor told me, “I believe you have endometriosis based on your symptoms.” That was the first time I heard I could have it. It wasn’t a disease I knew much about. My mom was diagnosed with it, but I never thought it was a possibility for me too. My gynecologist had said, “that’s impossible, there is no way you could have endometriosis because the birth control would have taken away the symptoms. It might all be in your head.” That’s when I had stopped advocating for myself; I’d kept quiet for years. I’d wanted to find another doctor, but I didn’t know where to start. 

In 2015, I started my career as an x-ray technologist. I was so excited to work in healthcare, but my symptoms were becoming more of an issue and everyday life was a struggle. I also had to find a new doctor because of my new insurance. This time I knew to look for an OB/GYN who specializes in endometriosis. I found my current doctor—one of the best decisions I’ve ever made. She listened to me and also thought I had endo. She also sent me to a pelvic floor therapist. It was also the first time I was told I had a bad pelvic floor. She tried another birth control. I stayed on that for a couple years and got married in 2017.

In 2019, we decided to try to get pregnant. I got off birth control after being on various forms for nearly 12 years. To put it lightly, I was terrified. I was pleased to be free of some symptoms of birth control. However, the cramps increased and before I knew it I was in horrible pain every single day again. The periods were unbearable and every month they came. Then in March of 2020, COVID-19 hit Ohio. At that moment I had a mix of emotions. I was sad that it had been almost a year of trying with no success, but I was also relieved I wasn’t pregnant at the beginning of a pandemic. I worked with covid patients and couldn’t imagine the added stress of being pregnant during that. But I was still being asked the question every woman in her late 20’s struggling with fertility hates to hear: “When are you having kids?” I hated that question because we tried and it didn’t happen. I went to my annual appointment and my doctor told me it was time to see a surgeon. That’s when things started moving fast. 

In November of 2020, I finally had excision surgery with one of the top surgeons in Cleveland who specializes in endometriosis. Before the surgery I still wasn’t officially diagnosed. The first thing I remember saying after I woke up was, “did they find it?” I heard her say, “yes, we found it.” I have never felt more of a bittersweet feeling. I wasn’t crazy; it wasn’t all in my head. I was validated. I had the disease another doctor told me was impossible. However, after my initial feeling of validation came the realization; I had just been diagnosed with a chronic illness with no cure. My end goal was surgery and after 13 years I thought my story was coming to an end, but I was wrong. 

After healing from my surgery, I still was unable to get pregnant. The second wave of covid was hitting my hospital hard and I decided to go back onto birth control until things calmed down or the vaccine was out. That’s when things took a turn for the worse. My surgeon told me my first period would be awful after surgery and she wasn’t exaggerating. My second period was just as bad—same with my third. However, I never stopped bleeding after my third. Weeks went by and the bleeding became heavier. Clots were never ending and the cramping was horrific. I called my surgeon and she had me come in for an ultrasound. As the ultrasound was being performed I could tell something wasn’t right. 

The next day my surgeon’s NP called me and told me my uterus was filled with blood clots and there was thickening in the lining. They believe it’s due to adenomyosis. Another disease? I thought to myself, “the outside of my uterus is bad and now the inside is bad too; what does that mean for me?” They recommend I start Norethindrone, double dose. I was on that for a few weeks and my symptoms had not improved. The side effects from it were making me feel even worse: headaches, nausea, and mood swings. That’s when the anger really set in. I was angry that I had yet another disease to worry about, angry that the medication wasn’t working, angry I was in just as much pain as I was before surgery. She had me come in for a saline ultrasound. Nothing had improved and they recommended I go on Orilissa. It causes my period to stop and triggers menopause symptoms. I can only be on it for 6 months due to bone density concerns. It has helped the most out of any medication I have tried, but the side effects are also taking a toll on me. My pelvic floor is worse than it’s ever been and I’m back in therapy. In a couple of months I will have an appointment with my doctors to discuss the next plan of action.

Endometriosis is an invisible disease. It’s lonely and I often felt as if I couldn’t say I was in pain because no one can see why. If there is anything I have learned over the years it’s that as a patient you need to advocate for yourself. Not every doctor is the right doctor for you or your disease. Being in pain every day is not normal. One of my best friends was also diagnosed this year. It made me realize how common this disease is (1 in 10 women have it), yet people—including some doctors—do not consider it as the possible cause for the pain women experience. I wonder if I would have been diagnosed sooner, would I be having all the problems I have now? I have worked on not being angry about my diagnosis anymore and try to remember I am one of the lucky ones. I still have my organs, and babies haven’t been ruled out completely. Also, having a support system is crucial. I’m very fortunate my mother knew the signs and tried to get me help. My dad, younger brother, friends, and my husband have all made a difference over the years. Having people that listen and believe you is so important for your mental health. I’m hopeful for a baby and pain-free future, but the only way to achieve that for myself and others is through awareness and education. 

Megan is 31 years old from Cleveland, Ohio. She is an X-ray technologist who primarily works in the operating room at her hospital. She enjoys spending time with her friends, family, husband and dog, Zoey. Megan has been suffering from endometriosis since she was 16, but continues to have hope of having a family and a pain free future. She is grateful to have an amazing support system. She hopes her story can help other women who are struggling and let them know they aren’t alone. 


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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.