Dancing Through Life (with Endometriosis)
Updated: Feb 27, 2020
Nikki Anderson begins her day with a glass of water and birth control. The 21-year-old rises early, around 8 a.m. to prepare for the long day ahead of her. She goes to her refrigerator, hoping to have a bit of almond milk left, and makes a cup of coffee. Nikki makes herself a small breakfast, hoping to fill her stomach so she is able to take the high dose pain medication she was prescribed by her doctor.
On the outside, Nikki looks like an average college student. She stands at average 5 feet 5 inches, with a thin frame that can be attributed to her years as an athlete and a dancer. Her brown eyes are large and welcoming, and you will never find her without a smile on her face. Friends and professors describe her as “a joy to be around” and a “kind person.” However, under the surface Nikki is living with a condition that affects about 1 in 10 women across the world: endometriosis. Endometriosis a gynecological disorder where the uterine lining tissue develops outside of the uterus, according to Mayo Clinic
Before her diagnosis Nikki lived, what she describes as “a very busy” life. Growing up in Toms River, NJ as the oldest child, with one younger brother, Nikki was always on the run. “I come from a very active family,” she said, “My parents were both athletes in high school, and we were always on the go.” At the age of five, Nikki was introduced to the love of her life: dance. Aside from dance, she became involved with field hockey in high school and participated in choir and musical theater. Her busy schedule prevented her from realizing that her health was in jeopardy.
“People would always tell me ‘oh you’re not getting enough sleep’ and ‘oh you’re wearing yourself thin’” she said. “That’s just how I viewed my life that I was just a busy and active person and that was why I wasn’t feeling the best sometimes.” Nikki found herself going to the doctor with various pains more frequently. She would experience intense menstrual periods and could barely stand up straight due to the pain. Finally, in the summer of 2018, she had an incident that would provide her answers after years of suffering.
Over the summer, Nikki worked at a local restaurant where she was a waitress and bartender. One day, she noticed the lymph nodes in her groin area became so swollen, that she could barely stand up. She called off of work and went to the doctor where they discovered a cyst on her ovaries. However, her pain continued to become more severe and manifested into digestive problems, making it difficult for her to eat and keep down food. After being misdiagnosed with irritable bowel syndrome (IBS), Nikki became frustrated. The pain persisted for over a month, and she had enough and made an emergency appointment with her gynecologist. “This isn’t normal.” Nikki recalled telling her doctor.
“I remember going in a series of ultrasounds and MRIs and them not finding anything,” she shared. “They would find a fibroid in one, and then I would come back two weeks later, and it would be gone. A fibroid isn’t something that just goes away”
Unfortunately, Nikki was no stranger to this frustration. Since her first period, she had experienced extreme pain and heavy flows that would cause her to miss weeks of school. “I had been going through this since I was in middle school, and I first got my period. Specifically for me, every month I was missing a month of school,” she said. “Because of, what others were telling me were just cramps were so intense that I physically couldn’t stand up straight. A lot of people may not understand that part of it. At one point I actually lost so much blood that I passed out at school. I was still very young. I would try to communicate this to my gynecologist. At a very young age it is hard to do come to terms with. It was a general fatigue, it was migraines, it was not being able to eat, not being able to keep anything down. All types of digestive problems that came very suddenly and hit me like a train,” she said.
“I come from a family where we just push through things,” she shared. “You get through it, you go to work, and you go to school. So I was getting very frustrated with my parents because, at a very young age they’re the ones who have to take you to the doctors.” Her parents did not understand the severity of her symptoms, no one did, until the fateful day she was diagnosed.
Many women living with endometriosis report having severe symptoms ranging from migraines to irritable bowel syndrome (IBS). “[Endometriosis] can impact a woman’s life because of fertility issues, painful menstrual periods as well as psychological and mental problems,” said Dr. Neilanjan Nandi, a gastrointestinal/ general surgeon at Drexel University College of Medicine in Philadelphia, PA.
Endometriosis takes a toll on the entire body, not just a woman’s reproductive organs. For many, the effects of endometriosis take an emotional toll as well. “It’s very frustrating talking to other people and trying to explain the kind of pain you are in,” Nikki said. “It’s like impossible.” This frustration often manifests into mental health issues such as depression and anxiety. It can also cause problems with other parts of the body as well.
“What a lot of people don’t realize is that these types of diagnoses also cause a lot of different things to happen in your body,” she said. “Endometriosis is what causes your IBS, what causes your migraines and [it causes] a drop in your immune system, so I get sick all of the time.”
Recently, Nikki caught the common cold, but due to complications with her immune system as a result of the endometriosis, her cold quickly became bronchitis. Her compromised immune system requires her to be more cautious about her health than her peers. Another aspect of life that differentiates Nikki from other women her age, is her decision to have children.
For most 21-year-olds, having children is the last thing on their minds. For Nikki and young women with endometriosis, it is a serious topic that needs to be addressed. According to the Endometriosis Foundation of America, endometriosis is one of the leading causes of infertility in women.
“The second time I went to see my gynecologist after the MRIs and both ultrasounds, one of the first things he [mentioned] to me before surgery was potentially putting me through menopause at the age of 21,” said Nikki. Induced menopause is often performed on patients with endometriosis, some physicians believe it relieves symptoms. However, for many young women, the conversation of inducing menopause and infertility includes IVF and possible alternatives for conception.
“One of the first things he brought up after my diagnosis was ‘Oh we should start thinking about freezing your eggs’,” she said. Nikki was shocked, children were the last thing on her mind. “I wasn’t even close to thinking about children but I’m going through college everyday thinking, wow, do I want to have my own kids in the future? Do I want to be able to carry them?”
Freezing your eggs is an invasive surgery, and for some, the procedure is not an option due to finances. “I went and did my research and the procedure costs about $10,000, a month,” said Nikki. “It seems like the only way to deal with this is if you have money.”
“Right now, I can’t really think too far ahead in my future because I’m a senior in college, I’m trying to focus on graduating and job searching,” she explained. Her endometriosis also takes a toll on her post-grad job hunt.
“Even with job searching, I have to look for companies that have really good benefits. Sooner or later I’ll be 26, and there’s the possibility that I won’t get good coverage.” Without proper insurance coverage, it is not guaranteed that Nikki will be able to afford treatments in the future. Many insurance companies also discriminate against patients with pre-existing conditions like endometriosis. “It is something we should pay more attention to,” she said regarding the finances of women’s health.
Currently, there is no cure for endometriosis. Many patients, including Nikki, are offered laparoscopic surgery as a method to relieve symptoms and to provides both patients and doctors with more answers. A laparoscopy is a procedure where surgeons create small incisions around the abdomen and use a small camera to observe the area. It can also be used for tissue removal, which is the case for many endometriosis patients undergoing laparoscopic surgery.
“Right now, I’m looking at getting surgery in December,” she said. “For a lot of women going through this, surgery is the only way to relieve [symptoms]. It’s something they may need to have up to every five years of their life.”
“Initially, I was relieved, it finally felt like I was getting some sort of answer and remedy,” she said, reminiscing on her first reaction to being told she needed surgery. “It was weird because surgery can be a daunting thing, to go under a general anesthetic and have somebody going inside of your body.”
As her surgery date draws near, she is reminded of the realities of endometriosis. “It’s starting to set in more,” she said. “Yes, it’s an answer, but its not a definitive answer. I could have to go through this for the rest of my life.”
Despite her hardships, Nikki remains positive, focusing on the things she loves. She is a creative writing and publishing & editing major at Susquehanna University. Aside from her studies, she is a member of Alpha Delta Pi, and the Vice President of the SU Dance Corps, where she teaches ballet.
Her love for dance is what keeps her motivated and provides her with relief. “Dance has been both my creative form and my exercise since I was five years old,” said Nikki. “It’s kind of the only thing that has been very constant in my life and has never [caused me] harm. Now especially, I find myself leaning on dance so much more as a form of exercise, releasing chemicals that can relieve some of the pain.”
Dance also gives her an outlet to cope with her day to day life. “It’s so relieving to have dance because it’s something that I love and hold dear to my heart, and its also helping with the pain,” she continued.
Nikki uses her voice, and various platforms including social media, to advocate for those living with endometriosis and other chronic pain illnesses as well. She will be graduating from Susquehanna University in May, and dreams of becoming the editor of a dance magazine in the future. Her future is bright, and she will not let endometriosis slow her down.