Guest post by Naiema Mohammed Hanif from India
I started having symptoms at around age ten. It all started with an episode of stomach upset. After this, my digestion never got back to normal. Around 14 years of age, months before my periods started, I had one night where I peed 15 times in less than three hours and couldn’t figure out why. I grew up in a lower middle class family and, by the very nature of it, doctor visits were restricted to serious issues.
My periods weren’t painful for the first two years. I mostly had diarrhoea randomly, and my mother treated it with home remedies. When I visited a doctor, he asked me to avoid outside food and I would be fine. Even after my period pains hit, everyone around me considered it to be normal. That’s the narrative they all lived with and they found it normal. Around the same time, I was diagnosed with chronic migraine.
At 19, my chest pain started and my overall symptoms began escalating: diarrhoea every other day, frequent urination, unending fatigue and migraines. I consulted a general physician who detected a murmur in my heart and referred me to a cardiologist. When I spoke about other symptoms, the doctor jokingly asked me to consume less water to avoid frequent urination. Only years later, I realised how much doctors gaslight you. The cardiologist diagnosed my Mitral Value Prolapse (MVP) but said it didn’t need treatment unless it got severe. However, my other symptoms were all ignored.
I used to be petrified to take trips by bus, or having to eat from outside, and just generally all normal things humans would do. I didn’t know what was a flare, or a flare food, or why my body was constantly sick. No doctors gave me answers. At 22, I consulted another doctor as my digestion wouldn’t get better. (At this point, I was casually referred to at home as a patient.) He repeated the same instructions: Do not consume food from outside, reduce eating junk. I did all of it, carried lunch boxes to work, stopped going out, and nothing seemed to improve. I was frustrated. I was sure something was wrong with me and more frustrated that no one could tell me. None of doctors even prescribed tests, as it didn’t seem fatal or life crippling.
A year later, I consulted a Gastroenterologist in the hopes of getting some answers to this unending illness. I had also kind of resigned myself to living with frequent urination, fatigue, migraines and body pain at this stage. My period pains were escalating, but everyone still told me it was normal. Added to that, my menstruation was regular, so it didn’t raise a red flag. The gastroenterologist didn’t conduct any tests, told me it was just stomach bacteria, and gave me some pills. It didn’t help, obviously. I lost hope around this time and gave up. I couldn’t afford to be running around town, finding doctors, or wasting all my money on pills, as I had one too many responsibilities.
Then I shifted to Hyderabad for a Teach for India Fellowship, and life got busy. When I was 24, random abdomen cramps started throughout the month. I would just ignore it. The TFI Fellowship keeps you on your toes, so I would just pop pills and not worry much about the indigestion, frequent urination, fatigue or the cramps. However, my friends took me to a doctor and he detected ovarian cysts. I knew nothing about them (thanks to the education in this country, not!) and the doctor convinced me it was normal and would go away on its own. A follow up consultation with a gynaecologist got the same result. During the second year of my Fellowship, my symptoms got worse and getting up from bed in the mornings became a heavy task. I was admitted in April 2018 as I was completely dehydrated and weak from days of nausea and diarrhoea. Again, they said it was food poisoning, gave me drips and discharged me.
My situation only got worse. I was convinced I had colon cancer, but the lack of blood in my stools would yet again make doctors dismiss me. Hence, I avoided doctors, managed my pain at home, and took up a job that didn’t require me to be at the office from 9 to 5. I was 26 when I started a new exercise routine, which triggered acute pain in my right abdomen that stayed for days. Nothing helped it and, to rule out Hernia, I consulted a doctor. He prescribed an ultrasound which revealed a 10cm cyst. Instead of being worried, I was relieved; finally, there was some evidence to prove my pain. I went to a gynaecologist, who thought it was an Endometrioma (ovarian endometriosis – also known as a ‘chocolate cyst’), and suggested surgery as it had already grown too big for medicinal treatment. I got multiple opinions and everyone agreed it had to be removed.
I underwent my first laparoscopy on 14 March 2019, after a delay of 17 years to find an answer to all the symptoms. She excised the cyst and injected me with Lupron (a chemotherapy drug) without my consent before I had even woken up from the surgery. Post-discharge, my follow up appointment was scheduled for ten days later. In the meantime, I started developing Lupron side-effects, which are their own kind of hell. Curious to know why I felt suicidal for no apparent reason and was crying non-stop, I read my discharge notes. That’s where I found the name of the injection and Googled it. What followed was pure hell: I found Lupron support groups, cases of Lupron patients, and doctors having faked Lupron research data.
That led me to Instagram, where I found my Endometriosis community, as well as my present doctor. Under his advice, I asked my previous gynaecologist to discontinue Lupron, and she had no choice when I presented her with all the knowledge I had gained. I discontinued her services a month later and flew to Mumbai to consult a specialist. Money, time and resources went into it, as I could no longer bear the weight of this disease.
Dr Abhishek Mangeshikar first contacted me on Instagram when I had created a profile for Endometriosis awareness and was talking about Lupron. Last May, I flew to Mumbai for a consultation. I had reserved a good 30 minutes for the appointment, including ultrasound, based on prior experience. But I was in for a surprise. Dr Abhishek spent 1.5 hours understanding my medical history, current symptoms, and just listening to understand better about my pain. Listening to patients goes a long way, and this was the first time in 17 years of consulting doctors and yapping about my symptoms that someone had actually listened to me.
He also found that the cyst had recurred, and hypothesised that my previous doctor had only drained it, not excised it. This called for another surgery, as my symptoms kept escalating each day – starting with sciatica, to acute pelvic cramps all day long. I underwent excision surgery in July 2019. The surgery took three hours and they excised all the Endo they found, along with the cyst.
It’s been a year post-excision and I can tell you that my health has never been this manageable before. A couple of dietary restrictions and everyday workout is all I do currently (no active medication or hormone therapy). Listen to everyone who tells you excision surgery is the gold standard treatment out there for Endometriosis. It’s no cure – there isn’t one as of now – but it definitely gives you your life back. With each passing month, I see fewer symptoms than before, less fatigue, and more hope of functioning as normally as a body with three chronic illnesses can.
My advice would be to consult an Endometriosis specialist. Dr Abhishek is filled with compassion and warmth, listens to everything you have to say, doesn’t dismiss any pain, and provides the best treatment out there. It’s no exaggeration when I tell Dr Abhishek that he saved my life. I can’t imagine what my fate would have been if not for me being vocal on Instagram about my disease.
Currently, I suffer from early stage Adenomyosis, but it’s pretty manageable for now. My Endo symptoms don’t show up unless I consume flare foods (cheese, coffee or oily stuff) and I’m very happy to have my community on Instagram for unending support and guidance.
You can find Naiema on Instagram @ENDOontgetmestarted