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Why I’m Fundraising to End Endo: Samantha By’s Endo Story

Why I’m Fundraising to End Endo: Samantha By’s Endo Story

When I read about my diagnosis, I had to Google the word “endometriosis”: a condition in which cells similar to those in the endometrium grow outside the uterus. When you learn about endometriosis, you learn about the pain—the pain that is so dreadful, it prevents women from getting out of bed and doing their daily tasks. Endometriosis affects 1 in 10 women, but despite its prevalence, it’s still so poorly understood. On average, it takes about 7 years to be diagnosed. Laparoscopic surgery is the only method for diagnosis and there is no treatment.

I didn’t experience the pain that endometriosis patients usually experience. I’m 31 years old. I have an active lifestyle and work out five times a week. I don’t smoke. Until my diagnosis, I had no health issues. After eight months of trying to conceive, my husband and I were thrilled to find out we were pregnant. But something didn’t feel right and it quickly turned into a nonviable pregnancy. During that first week, I had the worst back pain I had ever experienced in my life, where I wanted to cry every time I bent over. I remember thinking that women are saints (which, we are!), but I couldn’t even imagine what it would feel like at nine months if this orange seed was already causing me this much pain. 

Four days later, I started bleeding. I had an ectopic pregnancy, a complication where the pregnancy implants outside of the uterus. I didn’t understand why or how this was happening to me (“you’re young, you’re healthy,” they had said), but now my health was at risk (there was concern that a Fallopian tube could rupture and cause internal bleeding), so I put those thoughts aside and listened to my doctors' advice. 

Over the course of three weeks, I underwent two failed attempts of methotrexate injections to try and treat the ectopic pregnancy. While on methotrexate, I was told I could walk, but basically nothing more intense than that, in case it would cause pelvic distress and cause my tube to rupture. I was told that my husband and I had to watch for any clinical changes very carefully and to call if any changes occurred. I had five ultrasounds (where no ectopic pregnancy was ever seen, but there was always a seven cm blood mass in my cul de sac), 20+ blood draws, and eight doctor appointments. 

One morning, after the second methotrexate injection, I woke up at 5:30 AM with back pain that reminded me of the back pain I had when I found out I was pregnant. I called the on-call gynecologist, and she told me to go to the emergency room. They did another ultrasound, which showed the exact same things as the ones before. At this point, my HCG levels were trending down, so they were confident the methotrexate was working and that it would be a matter of time before I’d start to feel like my normal self. 

They were about to discharge me, but then my blood draw indicated I had lost about 300 cc of blood within four hours. So, they admitted me and put me on NPO watch (meaning I couldn’t drink or eat anything) in case I had to have emergency surgery. Six hours later, they did another blood draw, and my blood levels were stable. A doctor didn’t come to see me for two more hours, and they only came when I threatened to leave on AMA. They also didn’t give me food and I hadn’t eaten in over 24 hours. They charged my insurance $4300 for that 6-hour admission (and $11000 for the ED visit).

In the days following my emergency room visit, I was in pain and I chose not to walk unless necessary, but I was optimistic. My HCG levels kept decreasing. But one week later, my HCG levels spiked 50%. The attending gynecologist called me and congratulated me for speaking to every doctor in the practice (what an honor) and finally decided surgery was the only option (though they didn’t know exactly what they would find). I woke up from surgery with one less Fallopian tube (it was ruptured due to the ectopic pregnancy), but I was hopeful that all of this was behind us now.

The day after surgery I felt better than I had felt in weeks. I could walk more than 1/10 of a mile without sharp pains. A week later I nonchalantly opened my pathology report expecting to read something along the lines of “products of conception in left Fallopian tube,” but my pathology report also included a diagnosis of endometriosis. The endometriosis had affected my left Fallopian tube, which had caused scarring, which caused the ectopic. (25-50% of infertile women have endometriosis.)

In some ways, I’m relieved to have answers but I’m still waiting to find out how all of this will end. I’m telling my story to gain awareness of endometriosis and I want to normalize talking about women's health issues. I am so incredibly grateful to have a boss and colleagues who were understanding of all of my unexpected appointments and time off. I am grateful for all the women who shared their own traumatic stories while I was going through it. Not all women have this luxury and if I can’t openly talk about it, I can’t expect that to change.

Reflecting back, I am also in disbelief of the lack of bedside manners I received from my doctors throughout this saga. At my first blood draw, my phlebotomist read the order for an HCG level and asked if I had been pregnant before. In my first appointment, my doctor told me I should “hope it’s only a miscarriage.” When I was in the emergency room, I started crying as I explained everything that had happened up to that point, and one of the attendings asked if I “really wanted this baby.” When I pointed out that the pain was in my left back, they attributed the pain to me sleeping wrong on my back the night before and I was told, “We’ve seen lots of patients with ruptured tubes, and you just don’t look like one of them.” Ultimately, I know my doctors tried to give me the best care they could, while trying to avoid surgery at all costs (which is what I wanted). But, if that same care was given while being more empathetic and less dismissive, it would have made all the difference. For all the women who are experiencing pain from endometriosis and are being ignored—or even mocked—I hope that awareness is raised so that eventually, we can scientifically and medically understand the disease better. 

Samantha received her PhD in Biomedical Engineering from Vanderbilt University.  She currently lives in Guilford, CT with her husband Max and black lab Theo. In her spare time, she enjoys hiking and traveling. 


 

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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.