One day in September 2019, I laid down on my stomach as my physical therapist placed an ice pack on my lower back—a usual routine during my appointments for my back injury—but immediately I felt that something was different. The cold seemed to creep through my body and somehow, I felt a switch flip as the cold hit my lower abdomen. Suddenly, I felt the overwhelming need to vomit but could not. My legs felt weak as I trudged to the bathroom.
Once I was over some of the initial disorientation brought on by my strange reaction to the cold, I could tell that my period was coming. In some way, this was an explanation for the way the ice had weakened me. I assumed my period was an adequate explanation for almost anything: clots nearly the size of the palm of my hand, pain tearing apart my knees; with some creativity anything at all could be explained away and pushed aside by the fact that I menstruated. On the very occasional moments when I thought these issues were significant enough to mention to a doctor, the doctor typically confirmed that periods are just weird, and I shouldn’t worry. I always accepted this explanation.
When I finally came home from my physical therapy appointment, I was no longer acutely experiencing the twisting of my uterus, the soreness in my knees, or the aching of my lower back—the usual pain I experienced each month. Instead, all the pain had joined together, enveloping my entire body in lava. In addition to this feeling of lava, it felt like daggers had emerged in my uterus and were repeatedly stabbing my cervix. It became a nearly insurmountable challenge to move my body just to lay on a different side or to sit up. The waves of stabbing pain and fire all overlapped, and it became difficult for me to even hold onto one thread of thought while the pain continued to cry for my mind’s attention. I tried to tell myself that time would keep going and somehow this experience would end.
Then it seems that I blacked out. I woke up with a dull throbbing pain, but no more stabbing. The day eventually floated back to normalcy. By the time I lay down to sleep, I repeated to myself “that was today” as I tried to reconcile the fact that I had been in the most pain of my life just hours before and now felt nothing, a shallow nothingness that seemed divorced from reality.
At first, I didn’t talk about what I had experienced with anyone but my mom, and then only to say that I’d had some bad cramps but then felt better. While I was so ready to talk to orthopedists when I had ankle and back injuries, the thought of asking for help for this invisible thing that seemed linked to menstruation took a long time to become firm in my mind. Before my experience of intense pain in September, I had only recently begun thinking that I may need medical help for whatever it was that caused me to have recurring stabs of severe pain in unexpected parts of my body. When I tried getting help, I was often told I could just take ibuprofen, which I had already tried many times.
After the September day of even more intense-than-usual pain, I felt like something was deeply wrong and that I needed to make a healthcare provider see and acknowledge it. I wrote out a bullet point list of my symptoms with as much detail as possible. I carefully recorded the number of super-plus tampons I bled through each day of my period, how many times I had diarrhea, and every other detail I could think of. I traced a little silhouette of a person I found online and with red colored pencil, colored every part of my body that had been enveloped by that lava pain in September. I made an appointment with a new gynecologist the same month and handed her the document I’d made and asked her to read it. I was afraid of not being listened to, being interrupted, or being misunderstood; I saw this piece of paper as a possible solution.
In the end, I don’t know if it was the paper that helped or simply having found a doctor who was good at listening. She read my document and said that it seemed like I may have an underlying condition causing the pain. Though she didn’t know what it was, she took me seriously and acknowledged for the first time that my pain was not normal and that she believed me when I said that ibuprofen wasn’t helping. She suggested I try Nexplanon and I had the implant placed soon after.
The Nexplanon, like other birth controls I’ve tried, was not perfect. Though most of the side effects were short-lived, I did experience heavy spotting every day for five-and-a-half months. I called the doctor after one month and she let me know that it was normal and recommended leaving it in and seeing how my body adjusted over time. After five months, I called the office again to check if it was still okay. The nurse who took the call said, “If you were bleeding that much, you’d be in the ER right now.” I paused for a moment without fully processing what I’d just heard and replied, “I should go to the ER? Today?” After several phone calls, I ended up not going to the ER. At the end of the workday, I finally allowed myself to process my experience. The tinge of sarcasm that I perceived in the nurse’s voice stayed with me. “If you were bleeding that much…” rang through my head. The number of weeks that I had been bleeding was easily quantifiable, and even this had been waved away as if it were an exaggeration, or even a lie. As I fell asleep, I felt overwhelmed by the heat of anger at my feeling that doctors and other healthcare providers didn’t believe me.
But a stroke of luck came soon. I had been on the waitlist for a laparoscopic surgery and the doctors’ office called to say that they had a spot that just opened for surgery in two weeks. I felt excited at this suddenly approaching opportunity for answers and for healing.
Sometimes, as the surgery date came closer, the feeling of excitement teetered into anxiety as I pictured surgical instruments going into my belly. However, the anxiety didn’t truly hit until the day before the operation. I suddenly thought, “What if I don’t have endometriosis?” After multiple healthcare professionals had suggested that the pain I was experiencing was probably nothing abnormal, I felt shame at having a healthcare team perform surgery only to possibly find out that nothing was wrong at all. I stopped thinking about the surgery as a potential source of relief for my physical pain. Instead, I anticipated a moment of truth, where I would either look stupid and “prove” that I had been experiencing nothing at all, or would finally have some sort of physical evidence that my pain was real. I can see now that regardless of how the laparoscopy had gone, the pain I was feeling had not been “fake.” But in the days before the surgery, this thought weighed heavy on my mind.
When I got to the hospital the morning of the surgery, my doctor asked if I had any questions. I hesitated, then shook my head no. He told me that there’s one question that his patients always have, “what if I don’t actually have endometriosis?” The simple act of him acknowledging this question lifted a weight off me and I admitted that I was wondering the same thing. While I can’t say my anxiety disappeared completely in that moment, I did feel more listened to and understood at that time than at any other point in my journey with endometriosis.
For me, the surgery plus an IUD worked; I stopped experiencing intense pain and heavy bleeding. And the ability to see what was inside of me and exactly what was causing that pain was transformative. In images from the surgery, I could see the adhesions on my colon, my rectum, and my pelvic area. That, combined with my doctor’s quick pre-surgery reassurance that nearly everyone questions their own pain after so many failed attempts at addressing it, allowed me a feeling of relief. However, the relief was sometimes interrupted by an anger that became much clearer after the surgery than before. If all of that was really inside me, why had I been made to feel like my pain might not even be real on so many different occasions? During the surgery, my appendix was also removed; not only did it have endometrial lesions on the appendix, I also had appendicitis. Since I frequently felt stabbing pain in my entire abdomen, I wondered how I would have even noticed the telltale stabbing pain in my lower right abdomen in particular. All this time, what other sensations in my body had been drowned out by the static of persistent pain signals?
Today, my mind is not occupied by those feelings of anger. I am happy that everything worked out so well for me in the end. I had the privilege of finding a doctor with expertise in endometriosis just a couple years after I began trying, in earnest, to find a solution to my problem. I was able to get laparoscopic excision surgery, which is not accessible to many. Overall, I feel much better than I did before and have not needed any new surgeries or interventions in the past two years. I am extremely grateful, yet still occasionally frustrated when I remember that I didn’t fully trust my own pain until a doctor showed me photos of what endometriosis looked like inside of me. I hope that anyone reading this will allow themselves to feel their own feelings—whether physical or emotional. I hope that you will find somebody who you trust enough to tell them what you are experiencing and who trusts you when you tell them.
Alexa is a 24-year-old clinical research coordinator and birth doula currently living near Boston, MA. She aspires to become an OB-GYN and was inspired to change career paths and become a doctor in part because of her experiences with endometriosis. Alexa loves hiking, running, being with animals, and extending her Duolingo streak.
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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.