The individual interviewed for this illness narrative has given express permission for this narrative to be published on our course website publicly with their name replaced with a pseudonym. The individual understands that they can alter these permissions at any time.
Every weekend, JS, anticipates the arrival of her only child: me. The entire weekend is spent making the most out of the time we have together. Since I can remember, she has always put her family first and would do anything for them.
She was born and brought up in Tamil Nadu, India, and then moved to the United States of America in 2001. She is currently forty-six years old and resides in Cary, North Carolina, where she works as a computer analyst. She’s a small, intelligent, caring woman who always puts others first. In this narrative, I will be talking about her experience with having an ovarian cyst. The goal of this interview will be to answer the question: How does a medical condition, in this case, an ovarian cyst, affect someone’s life, especially when the condition is recurring?
JS grew up in the town of Kovilpatti, in a developing nation. At the time, the town had a large government hospital, frequented by low-income families, and a few private hospitals. The doctors at these hospitals were mostly primary care physicians, and some were obstetricians/gynecologists (OBGYN). The OBGYN services were mainly used by pregnant women, as others weren’t aware of the preventative care available. “For the first twenty-four years of my life, I had never been to the doctor. I never went to the OBGYN, the dentist, and I might have gone to my primary care physician, once,” says JS. These services were “very expensive” and felt “unnecessary,” unless it was an emergency. There was also not much awareness about medical services available, as they were limited where she was.
Newly married, at the age of twenty-five, JS noticed irregularities in her menstrual cycle, so she went to a doctor, to make sure nothing was wrong. She had felt no pain or any other feelings of concern prior to this. After an exam and a diagnostic ultrasound, she was told that she had an ovarian cyst on her left ovary. At the time, JS did not even fully understand what her diagnosis was. She was only told that it was the reason for the irregular cycle and that it might be genetic. She was given a medication to fix the irregular cycle and then was sent home, without any information about the actual cyst. JS states that the lower level of care was most likely because of the limited resources and awareness within the Indian medical system, but at the time, they didn’t think much of it. My father and mother “brushed it off” as they were about to start a new chapter in their lives: they were moving to a new country.
Ovarian cysts are said to be one of the most common problems affecting pre- and postmenopausal patients and that around 10% of women in the U.S. will undergo a surgical procedure for an ovarian neoplasm in their lifetime (Farghaly 609). Ovarian cysts are fluid-filled sacs or pockets in an ovary or on its surface. They can present with little to no discomfort and are harmless, where the majority of them disappear without treatment within a few months (Ovarian Cysts par. 2). In more severe cases, menstrual irregularities and pain can occur. They are usually diagnosed using ultrasounds and sonograms, where magnetic resonance imaging (MRI) and computed tomography (CT) imaging can be used for more intensive observations (Farghaly 609). When and if they need to be treated, hormone medications can be used to decrease the size of the cyst and help it go away while also keeping them from reoccurring. In more severe cases, laparoscopic surgery, a surgical procedure that allows a surgeon to access the inside of the abdomen without having to make large incisions in the skin, is used to remove the cyst.
Towards the end of 2000, JS and her husband’s visas got approved and they moved to the United States of America. Things had gotten back to normal and their busy lives, with work and accommodating to living in a new place, meant they “didn’t have time to go to the doctor.” After a few years, in 2002, they moved to Joliet, Illinois, a suburb of Chicago. The irregular cycle had still not gotten back to normal. This called for another doctor’s visit. After the same tests and scans, which led to the same conclusion, JS was given Clomiphene, an estrogen modulator, to treat her condition. The only thing JS could do was trust the doctors as “they knew best.” She, again, “brushed it off,” and went back to work so that she and her husband could work towards expanding their family. After around two months, she experienced severe stomach pain that she described as “unbearable.” She took Advil, antacids, and ayurvedic remedies to treat the pain, but nothing helped. The pain only got worse, to the point where she was “rolling around in agony.” My father immediately took her to a nearby hospital and she was admitted. The pain was so severe that she was given IV pain medications. After more intensive tests and scans, including CAT scans and an MRI, she was told that the ovarian cyst got bigger, much bigger. It had grown from around one centimeter in diameter, to now six centimeters, which is a little smaller than a tennis ball. It had caused her fallopian tube to twist, and it was in a critical condition. She was told that she needed emergency surgery to remove the cyst and fix the tube.
At first, they were debating between a C-section surgery and a laparoscopic procedure. My parents were given counseling as they had not had a child yet and one of the risks of the C-section surgery was the complete removal of the left ovary. This meant a fifty percent decreased chance of pregnancy. My mother was “terrified” and was “heartbroken” as the thought of not being able to have a child was something she could not even fathom. But being the woman she was, she wanted to stay strong so that my father would not be scared. After taking into account JS’s wishes, the hospital reached out to a laparoscopic specialist, “sent by God,” that had flown from California to Chicago for a conference to consult on my mother’s case. After discussing the procedure with the specialist, they decided to give the laparoscopic procedure a try, as it had significantly less severe complications. They waited a couple of days to see if the cyst would shrink after some more medications were given. After four days, the cyst had still not decreased in size and it was time. She was immediately taken into the operating room and now her life was in the hands of the surgeons. JS said she felt “powerless” and “not in control” as everything was happening so fast. She stated that she felt more like “a project than a person.” This has to do with the patient and their relationship with the health care they are receiving. This is a big issue in the medical industry as physicians can sometimes lose sight of the fact that they are treating a person, not just the condition. After an hour-long procedure, they were able to “clear” the cyst with only two small incisions left in my mother’s abdomen. Two days post-operation, JS was cleared to go back home.
A few months later, JS and her husband moved to California, where she found out she was pregnant with her first and only child. She said she “could not believe it.” She even “made the doctor do the test 3 times to make sure” as she was concerned that her surgical history would affect her chances of having a child. She took this as a “blessing from God” and it changed her whole life. She now had her “dream:” she was a mother. The rest of her life would now involve providing for, and taking care of, her child and husband so that they could “live a happy life.”
Flash-forward to sixteen years later, JS started to face the same symptoms again. She started having an irregular menstrual cycle and, this time, immediately went to an OBGYN. After telling them her medical history, to be safe they did an ultrasound and found yet another ovarian cyst on her left ovary, that was four centimeters in diameter, which the doctor explained to her as being “the size of a golf ball” and another one on her right ovary, that was around one centimeter in diameter. All my mother could think about was what complications these cysts could cause and if she would have to get surgery again, as it was a “very traumatic experience” for her the first time. The major difference was that now she was not as worried since she wasn’t planning on having any other kids. This was the main cause of “emotional pain and stress” she faced the first time around. This changed how “concerned” she was and the way she felt about her diagnosis. Medicine had also come a long way in the last sixteen years, which meant that the medications and treatments were now more effective. This changed her outlook on her situation. She was prescribed a different estrogen modulator medication, and after a few months, which involved regular follow-ups, scans showed that both cysts had significantly decreased in size and were almost gone.
From this narrative, we see that aside from the person’s physical condition, their emotional state and how they deal with their condition is based on many factors in their life, such as their future plans and personal beliefs. When JS was diagnosed and treated for her first ovarian cyst, the procedures used were relatively new and some were even experimental, which meant there were more risks involved. On top of this, she had her future and her dream of motherhood to think about as the occurrence of a complication meant that her chance of having a child would be significantly reduced. The second time she was diagnosed, she was at a different stage in her life. She was already a mother and had the number of children she wanted, which meant her biggest emotional stressor was taken away. On top of this, the development of medicine made it easier to “trust the doctors” and “the treatment” which also helped with her mental state and emotional condition where the situation was not as hard on her.
JS’s main takeaway from her experience with this condition was “the importance of listening to your body.” JS said that “when you are in pain or feel that something is off or wrong, go to the doctor. Your body is trying the tell you something and you should listen to it.” She then talked about how these types of experiences with a medical condition always stay with you, as it was such a significant part of your life, especially if it was/is an ongoing problem. She says, “to this day, when I look at you (her daughter), I think about how grateful I am that they were able to remove the cyst without any complications, which led me to having you.” She then smiles and kisses me on the cheek as I finish typing and starts talking about what she is going to make for dinner.
Farghaly, Samir. “Current Diagnosis and Management of Ovarian Cysts.” Clinical and Experimental Obstetrics & Gynecology, vol. 41, no. 6, 2014, pp. 609-612. https://ceog.imrpress.com/EN/Y2014/V41/I6/609.
JS [pseudonym]. Interview. Conducted by Anushree Jeyakumar, 12. Nov. 2021.
“Ovarian Cysts.” Mayo Clinic, 26 Aug. 2020, www.mayoclinic.org/diseases-conditions/ovarian-cysts/symptoms-causes/syc-20353405.
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