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My journey with endometriosis

“You’re too sensitive, Sargam,” my doctor said apathetically.

“What you’re feeling is normal and it happens to everyone. You just need more iron in your
system and you need to be stronger.”

This wasn’t the first time a medical professional had implied that I was weak.

At this point, I was half convinced that I was. As I watched him scribble prescription notes for yet another round of supplements, I felt myself bleeding through my fourth pad of the hour. The sharp pain in my pelvis was unbearable. My muscles were sore, I had a throbbing migraine and I was exhausted for no particular reason. I wasn’t even sure if I had the energy to get up and walk out the door.

No, this can’t be normal.

Surely it wasn’t normal to experience periods with my dreaded symptoms every month. I knew that menstruation affected everyone differently, but most of the people I knew were capable of carrying on with life during their periods – even if they had to endure one or two bad days. This was no ordinary period. This was torture.

I’m Sargam – Data Scientist, dancer, and endo-warrior.

I’ve been living with stage 4 endometriosis for the past 18 years – but was only diagnosed with it in 2018, after 15 years of suffering.

I got my first period when I was 12. I was in constant pain with extremely heavy bleeding

for 10 days straight although I didn’t think anything of it at the time.

You see, periods were (and to some extents still are) a taboo subject in my country of birth, India. It’s treated with awkwardness and disgusted looks. People are not interested in discussing, understanding, or normalizing menstruation so the topic is swept under the rug – the same way we are forced to hide or disguise our pads in public.

Between the ages of 12 to 14, I endured heavy bleeding, fatigue, breathlessness, and loss of energy every month, never telling anyone of my issues because I was afraid of the judgment I would receive.

Until one morning, when I fainted while waiting in line during morning prayers at school. A quick blood test revealed that my haemoglobin levels were at a 6. To give you an idea of how abnormally low that was, most teenagers have a haemoglobin level of 12 to 15.5 grams per decilitre. I was anaemic. The doctor prescribed me medications, recommended that I eat more iron-rich foods like spinach and lentils, and asked that I consult a gynaecologist.

And thus began my unending visits with medical professionals.

While my friends attended school as usual, celebrating festivals and excelling in sports and extracurricular activities, I was frequenting hospitals for blood tests and ultrasounds. On the outside, I was a talented artist, Sportsgirl, and scholarship student but on the inside, my body was 15 going on 50.

I tried every possible treatment recommended to me. Ayurveda, hormonal medication, homeopathy, allopathy, naturopathy – you name it. Nothing made me better. Instead, the combination of medication and treatments hit me with adverse side effects. I gained weight around my gut, experienced hair loss, my vision started deteriorating, and faced digestive problems. I went from being a joyful, fun-loving, and proactive teen to someone who was constantly anxious, frustrated, and fearful.

But the most devastating thing I had to accept was my giving up dance. I started learning Bharatanatyam (Indian classical dance) at the age of 4 with the dream of becoming a professional performer. A dream that would remain just that once I came of age because my periods made it impossible to perform with the energy and strength needed to carry off this incredible art form.

Soon I became “Sargam, the girl who was always sick”. It hurt because I knew that I was much more. I was

a bright student, a choreographer, a dancer, and a strong-headed girl with natural leadership qualities. Yet my true identity was shrouded behind the thick fog that was my disease.

What they don’t tell you about living with endometriosis

If you Google endometriosis, you’re likely to find information regarding:

  • Definitions. Endometriosis is an inflammatory disease that occurs when tissue similar to the lining of the uterus is found in places outside the uterus such as the pelvis, ovaries, and bowel.
  • Statistics. Roughly 1 in 10 people who menstruate will have endometriosis.
  • Or pain symptoms. Pelvic pain, period pain, fatigue, abdominal bloating, nausea, and more. It is considered one of the 20 most painful conditions in the world.

But no one tells you about the impact endometriosis has on your quality of life.

By the time I was 24, I was an empty shell. My body was still alive, yes, but the person inside was barely living.

I had completed a master’s degree in software development and was offered a job by one of India’s leading software companies. But what was supposed to be an incredibly happy moment in my life was instead riddled with anxiety.

How would I deal with my agonizing pain while I was at work? How would I explain to my employer that I needed to take 7 days of sick leave every month when my period was at its worst? How would I dodge my colleagues when they ask me to join them for dinner?

I started isolating myself because I felt like a burden. Not wanting to be a downer or “make it about

myself” as one friend put it, I stopped talking about how I was feeling altogether.

People could not see my invisible illness so they assumed I was either playing the sympathy card or too weak to handle my disease. I would get judgemental stares if I took a rickshaw to a store 500 meters away or disapproving looks if I didn’t give up my seat for elderly folks on the bus. What they did not see was the immense amount of strength it took to get out of bed and leave the house. Simple things like doing grocery shopping would require meticulous planning and heaps of rest the day after from fatigue payback.

“You don’t look sick, though,” a friend once remarked. “Are you sure you’re not just being dramatic?”

By then, I was mature enough to take these comments with a pinch of salt. But it was one thing to hear it from friends and gossiping aunties and another to hear it from your doctors.

No one tells you about the gaslighting you’ll face from people around you. Yes, even doctors. As if you’re

the one making a scene and it’s all happening inside your head.

No doctor wanted to take my condition seriously and I couldn’t understand why. Why did no one respect me enough to trust my lived experience? Why would I lie about my incredibly painful condition – what would I gain from that?

I’m not ashamed to say that the thought of ending my life crossed my mind several times during this period. This illness had consumed so much of me – I felt as though I had no reason to live. My peers were getting married, traveling the world, and building a career for themselves and I was stuck dealing with every possible symptom, feeling unworthy and wishing it was over.

Mummy, my guardian angel

The only light in my life was my mother, Dhatri (which fittingly, means Mother in Indian Language).

While the whole world was trying to convince me that I was crazy, mum was the only one who stood by me. She fed me when I could barely get out of bed, kept my spirits high when I had given up hope, and was my sole pillar of strength. Although she could not feel my pain, she understood my struggle better than anyone else. I knew that my condition was extremely hard on her but despite her sacrifices, she never complained.

By 2018, we were both at odds about what to do. We tried every possible solution, explored every single option, and met with 15 gynaecologists. My condition had not improved one bit in fact, it had only worsened. I was on the verge of giving up when my mother convinced me to see one more doctor.

Fine, I thought, fully prepared for nothing to come of it. What’s one more?

Sure enough, my new gynaecologist was no different from the rest. The only reason he recommended that I undergo surgery was to prove me wrong. Who could have guessed that his spiteful intentions would finally bring me peace?

On 17th July 2018, I underwent a four-hour laparoscopy procedure and it was finally confirmed that I had endometriosis. It wasn’t in my head, I thought. I was actually suffering from menorrhagia, adenomyosis, and endometriosis grade 4.

For once in my life, I felt good. The mental relief of knowing that my pain was validated itself was a huge weight off my shoulder. While I wasn’t completely cured, my symptoms had subsided enough that I could go back to living a normal life.

New Zealand seemed like the perfect place to start my new life since data scientists were in demand. In New Zealand, I felt we were free from judgemental eyes, insensitive remarks, and the negative baggage that was weighing us down. India will always be home but it was nice to be somewhere different where I was accepted, not just tolerated.

While I worked hard on my second Master’s degree, mum took care of us. In the morning we would drink chai and exchange stories, in the evening we would play board games or listen to old Hindi songs together. Life was simple and perfect.

Sadly, the happiness did not last. We started to notice little changes in mum. She wasn’t able to eat properly, her gums were always bleeding and she would have night sweats. Months later, we got the dreaded call – my mother had Acute Myeloid Leukaemia. I still remember going numb when I heard them telling me. In her typical selfless state, mum began reassuring ME that everything would be okay. That was mum, always thinking of others before considering her own feelings or needs.

The chemotherapy kept her cancer at bay for as long as it could and mum lived for 2 more years than the doctors had given her. However, she desperately needed a bone marrow transplant and doctors recommended that we return to India to complete the procedure. While awaiting for her transplant in the hospital, she developed an infection and passed away in June 2022.

I had lost my soulmate.

An endless battle

Eight to ten months after my first surgery, my endo symptoms returned and an MRI in September 2020 revealed some blood clots, so the plan was to complete my second laparoscopy in a couple of months after an MRI, but after mum’s diagnosis, I couldn’t go through with it and left unattended, my symptoms became worse, but when mum’s condition improved slightly after her chemotherapy, I booked my second laparoscopy and hysteroscopy in Auckland and had my surgery on December 2021.

This time, I recovered much quicker. I knew what to eat, how to rest, and what could trigger a flare-up. I was armed with knowledge about endometriosis and had a community of fellow endo-warriors to share my experiences with. This time, I was no longer going into battle alone.

This isn’t so bad; this could be my new normal.

However, my symptoms returned after a few months and I was referred to another gynaecologist in Hamilton, where I lived. On top of my grief and emotional trauma, I was once again dealing with the excruciating pain and fatigue of my chronic illness. That’s when it hit me that my endo was a part of me, whether I liked it or not and the only way to find peace was to embrace it.

Carrying forward with my chronic companion

Endometriosis is an extremely complex condition with many unsolved mysteries. Despite affecting around 176 million women, girls and those assigned female at birth all over the world, with around 120,000 suffering in New Zealand, there is still a deep lack of awareness about it.

I often think about how different life would have been if the doctors had believed me and diagnosed me earlier. If the people in my life were kinder, I might not have suffered so much emotionally and mentally. If employers had more knowledge about this condition, I might have had a shot at a successful career. But I’m also grateful for what this experience has brought me. It strengthened my relationship with my mum, and taught me to listen to my body, and love myself unconditionally.

I’m sharing my story to enlighten and hopefully educate more people about the stigma and impacts of endometriosis. I want to give a voice to all who suffer silently from this menstrual disorder. If you know someone suffering from endometriosis is showing symptoms, be kind. Empathise with their pain. Stand up for them in the workplace so they feel supported. Your compassion can change their life.

And if you are experiencing abnormal pain and/or heavy bleeding during your period, I encourage you to reach out to a good gynaecologist and advocate yourself. Connect with other endo-warriors to build a strong support network. Practice self-love. Share your story to help others. Remember, this is only a small slice of an otherwise amazing life.

I’m proud of you, my girl!!

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