Perspective: How I Suffered With Endometriosis for 14 Years Until I Finally Got My Answers
I still remember everything clearly. It was a busy day in the lab.
I was in the middle of isolating RNA from the stem cells I’d been growing when my phone rang. I had half a mind to not answer until I saw who was calling. “Something has come up in your MRI scan. Can you come see the doctor?”, said a lady’s tense voice. I remember being half worried and half relieved. Relieved, because hopefully now there would be an explanation for my pain. And proof that it was not ‘all in my head’.
I had been seeing doctors for more than five years about unbearable abdominal pain during my menstrual cycle. Several years and several doctors’ visits later, a doctor finally had a suggestion for what may be causing the pain: endometriosis. A disease I suspected I had one whole year before any doctor said it. Before receiving this diagnosis, I had doctors either not take me seriously, or tell me to get pregnant.
As a teenager embarrassed to talk about the changes happening to her body, I wouldn’t discuss this with any of my friends. Moreover, coming from a country like India where there are taboos surrounding menstruation and period pain is normalised, discussions around this topic were less than welcome. Over time, I accepted my fate and learnt to hide my pain.
Endometriosis is a painful condition where tissue similar to the inner lining of the uterus starts growing outside it. Symptoms include chronic pelvic pain, painful periods, fatigue, pain during bowel movement, urination, and sexual intercourse. In spite of affecting almost 10% of menstruators (almost 200 million people globally), the average time patients have to wait for a diagnosis is almost 6.7 years, leading to a lower quality of life in addition to debilitating pain. And ironically, some researchers suggest that stem cells gone awry may be a cause of the condition.
For me, the pain started when I was about 12 years old. Like all other pre-teens, my first period was awkward. But the real trouble started when it got painful. I used to have cramps that wouldn’t even let me get off the bed. My twin sister didn’t have it this bad, so I simply thought I was the unlucky one. As a teenager embarrassed to talk about the changes happening to her body, I wouldn’t discuss this with any of my friends. Moreover, coming from a country like India where there are taboos surrounding menstruation and period pain is normalised, discussions around this topic were less than welcome. Over time, I accepted my fate and learnt to hide my pain. There would be days when I would be in so much pain that I would feel like I was going to faint, but no one would even have a clue.
As an adult, I started speaking more and expressing my pain. I soon realised I had it much worse than most others. As a biologist in training, I realised something is not right. That is when I went to a doctor for it for the first time. The advice I received was “as a girl, you have to go through some pain, some girls have it worse than others”. I wasn’t convinced, so I went to another doctor. And then another one. This cycle continued for the next five years. Doctors wouldn’t get exactly how much pain I was suffering from, and would simply give me painkillers without trying to solve the cause of the pain. Not that the painkillers didn’t help. They did until they didn’t anymore. And then the cycle of visiting doctors continued. Amidst this, I had them tell me all sorts of things. Some asked me to get married (a more socially acceptable term in India to become sexually active), some advised me to have children, while some others completely invalidated my pain.
Amidst this continuous cycle of pain, my life became a rut of adjusting my whole schedule around my period cycle: planning experiments such that there was little to no work during my period week. While others got four weeks a month to work and live their lives, I had to adjust everything in just three weeks every month. Luckily, I had the freedom to plan my work independently. My advisor was supportive and advised me to resolve my health issues before worrying about my work.
Additionally, coming from a biology lab, my peers understood my pain, insisting that it wasn’t normal, and urging me to see doctors to get it resolved. I didn’t know how to explain to them that I felt like the medical system had betrayed me. That most of the doctors simply didn’t care about my pain.
Above us, the ceiling fan rotated lazily, as I was preparing myself to hear the words I had heard so many times: “just take some painkillers”, or even worse “it can’t be that bad.” Sensing my unrest, my partner persistently kept telling the doctor how much pain I was in, insisting that we find some solution.
Interestingly, the first time my pain was taken seriously was when I was accompanied by my male partner. The doctor frowned as she went through my previous reports. As we sat in her white, sterile office, I fixated on the anatomical model of a pregnant female carrying a foetus. Above us, the ceiling fan rotated lazily, as I was preparing myself to hear the words I had heard so many times: “just take some painkillers”, or even worse “it can’t be that bad.” Sensing my unrest, my partner persistently kept telling the doctor how much pain I was in, insistin