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, insisting that we find some solution. He had to vouch for the level of my pain before she realised the magnitude of the situation. That is when she prescribed an MRI that eventually confirmed my suspicions about having endometriosis. She promptly put me on hormone treatment to suppress my menstrual cycle. “Other than this,” she said, “there is nothing much that can be done.”

The Xylom Illustration

But a few months of hormone treatment weighed down my mental health. I felt increasingly depressed. I would wake up in the middle of the night and start crying for no apparent reason. Just getting off the bed used to take up all my energy. Lab work and life became a chore. I started looking for alternatives. And so my cycle of consulting doctors began all over again. I asked around my friends and family for good doctors. I consulted more doctors, some in the city I lived in, and some back in my hometown, Mumbai, when one of them finally told me they could help. I underwent surgery, where some endometriosis was removed. But according to the doctors, it wasn’t enough to cause the pain I was claiming to be in. Feeling like I was just slapped on the face, I explored the possibility that I had low pain tolerance, or like many other doctors had told me, it was ‘all in my head’. That hurt more than the pain ever had.

Post my surgery, I tried to get on with my usual life. To my surprise, my pain had indeed become bearable. I rejoiced at this new-found pain-free life I was getting to live. But the joy didn’t last long. Like an uninvited guest that keeps showing up, my pain was back. And this time, it wasn’t only when I was bleeding. It was there all the time. Initially, it was bearable, just a constant, dull ache in my abdomen. However, it turned into a much sharper pain in a few weeks. I felt like someone was twisting my insides using tweezers while at the same time stabbing me from the inside with a knife.

I felt like someone was twisting my insides using tweezers while at the same time stabbing me from the inside with a knife.

So before long, I went back to my routine of looking for doctors who could explain why this was happening to me. It was during this time that I finally found a doctor who ultimately helped me. I remember sitting in his office with my parents on either side of me, treating this like just another doctor’s appointment, ready to be dismissed yet again. As had become my habit, I fixated on something in the office to distract myself and prevent my thoughts from spiralling. I was obsessing over an anatomical model of the uterus when the doctor gently asked me to explain what was troubling me. His calm and compassionate manner surprised me, and I told him everything that had happened, right from the unbearable pain to the previously failed surgery. To my astonishment, he actually listened to everything I had to say and didn’t dismiss me or my pain at the first opportunity he got. He suggested getting an MRI, and when I got one, he sat with the MRI film, explaining patiently where all the endometriosis was present and how it was affecting my ovaries, my uterus, and my nerves. “That,” he said “is the cause of your continuous pain.” I was scheduled for another surgery, my second one within a span of a year.

As soon as I was out of the surgery, I asked if they had found and removed any disease. The doctor said they had, and they were waiting on histopathology reports to confirm that it was indeed endometriosis. My mind began racing. What if it wasn’t endometriosis? What if there was nothing, and I had indeed made up my pain? What if this surgery didn’t help either?

At my follow-up appointment after the surgery, my doctor confirmed that the tissue that was removed was indeed endometriosis, and was the root cause of my severe pain. I remember the feeling of validation as I stepped out of his clinic. The trees swayed gently with the wind and the birds made their way back to their nests. It was the same street that I had seen an hour ago while entering the clinic, and yet it seemed more beautiful now. I was ready, for the first time in many years, to live life on my terms, and not on the terms of my chronic disease.

As I write this one month into recovery post-op, I look back and realised that I’m a changed person because of my experience. I don’t trust people easily when they say they believe me. I avoid seeing doctors about anything, even if it’s not related to endometriosis because I think they will dismiss me or my pain.

I’m willing to wait a few months to see some positive change. After all, I’ve tolerated this disease for so many years, so what are a few more months?

I’m still struggling with pain, which according to the doctor will take a few months to dissipate. Though it gets exhausting and I wonder how much longer I have to suffer, I’m willing to wait a few months to see some positive change. After all, I’ve tolerated this disease for so many years, so what are a few more months? I’m more determined than ever to combine this recovery period with my biology qualifications and background to talk more about the disease.

I think I owe this resilience to my ordeal. It shouldn’t have to be this way, but my chronic illness has taught me to be patient and not give up hope, no matter how difficult things may get. Though I’m hopeful about my pain reducing and grateful that I found a doctor who could help me, I can’t help but wonder how different my life would have been if all those doctors had believed me.

I guess there’s no way of finding out. I hope that with time, I will learn to forgive them, and myself, for not speaking up earlier. I guess that would be the first step in my healing journey.

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