Lessons from PCOS

‘Don’t come to school. You’re so pale, you look like you’re whitewashed. You should go home’, said my teachers during my 12th grade practice exams, before the big finals. It was true. I was exhausted. I had a Hemoglobin level of 6.5 and I was suffering from severe anemia and PCOS. I don’t know why I came to school - maybe the pressure of the exams? For me, PCOS was diagnosed a little differently. I didn’t put on weight. Instead, I lost weight and I was exhausted all the time. From 7th grade, when I first got my period, I always bled for 15-20 days a month straight. Then I wouldn’t have a period for 2 months. When it eventually came, I had severe bleeding and cramps. And it only got worse from there. I was good at sports in 9th and 10th grade, but I had to let that go because I couldn’t handle it. I lost my speed and stamina. After that, I just concentrated on academics. I tried Ayurveda, homeopathy, yoga, energy healing - everything. I just didn’t want to go to Allopathy because I knew I would be put on hormone medications and I absolutely hated the idea of having to pump synthetic estrogens and progesterone into my body. But I had no choice. During those 12th grade practice exams, things had gotten so out of hand  that I had to go to a gynecologist and get a scan. I had been bleeding for 25 days straight by then. She diagnosed me with multiple cysts, ovaries enlarged to almost twice their size, severe anemia and an endometrial lining thickness of 12mm (even after 25 days of continuous heavy bleeding). For reference, the thickness is only supposed to be 2-3 mm during a woman’s period. The doctor said, ‘What took you so long to get it diagnosed?! How did you survive with this condition?’ I said, ‘I didn’t want synthetic hormone medications. I’ve heard about them a lot - how they can cause weight fluctuations and other side effects’. She said, ‘Well now you have no choice but to have them. If you had delayed this visit any further, we would have had to perform surgery because it would’ve been too late to treat this with just medicines.’

I accepted defeat and started the medications. I went straight to give my final exams without giving any of the practice exams or much studying. And then came the most horrible phase – managing the side effects. My mood fluctuated between highs and lows. Sometimes no matter how much I ate, I was hungry all the time. Other times, my appetite was completely shut off. One bite of food would make me feel nauseous. I either slept too much or slept too little. I knew it was all because of the hormones. When my first period arrived after the medicines, it was extremely painful. Mainly because my very thick endometrial lining had to be shed out in the first couple of cycles. I remember, on Day 1 of my period, I got up at 5 AM with SO much pain in my abdomen and vagina. I can never forget that pain. I sat on the toilet for half an hour because I had terrible cramps and I could feel my uterus contracting. I’m not exaggerating, but I think I got a tiny glimpse into what a mother goes through when she pushes out a baby at the end of her pregnancy. Because at the end of that half an hour, my uterus pushed out a huge apple-sized blood clot. It was a chunk of my endometrial lining. I don’t think I can ever forget that, and the thought of it still makes my stomach turn. Thankfully, things slowly got better in the next few cycles.

But I carried this difficult journey with me through college. Most days I was normal. But some days, especially before my period, used to be so difficult. I used to get easily irritable, had very bad mood swings, felt depressed and tired. The body pains were the worst. I used to wake up in the morning feeling numb and drained. I couldn’t move my legs, but I had to force myself to get up and start the day. And that was not even the toughest part. Sometimes, I used to feel sad and cry for no reason. This was particularly bad during my fourth semester. Two of my roommates helped me get better. But even they used to get confused when I cried AND laughed at the same time. I used to say, ‘I don’t know why I’m crying. I just can’t stop. I feel so empty and hopeless’ and then go on to say, ‘I think I’m laughing at myself because it’s stupid to cry. I have no reason.’

I was also on the dance team in college. The team was so active; they had long practice hours and so many events going on every now and then. It was like a full-time job. But I loved it. After sports, dancing was one high-energy activity I enjoyed – learning, practicing, performing, just everything about it. During those few minutes on stage, I used to let go of all my thoughts and soak in the spotlight, dancing what I had practiced a million times. It was muscle memory. I derived a sense of thrill out of it. But this one time, I remember there was a small event at our open-air stage and I had just gotten my period then. My body ached everywhere and my uterus... well,  it was somersaulting. But I couldn’t back out at this moment because it was a group performance and people were relying on me to fill my position and do well. The formation had been set and my space was well at the front, so if I dropped out, the whole performance would look ugly. I was dying inside, but I put on a smile and showed up anyway. On stage, when the music started, I froze. I just froze! My hands and legs refused to move. I usually get an adrenaline rush on stage that forces me to be all jittery and pumped up. But this time, I just felt numb and weak. In my head, I can see all the steps that I’m supposed to be doing running like a filmstrip. For about a minute and a half, I just stood there trying to catch up, but this was one of those high-energy fast ones, where if I missed a starting step, the entire thing was gone. I got down the stage after that and was forcing myself to keep it together. A friend came and hugged me and I burst into tears. I couldn’t sleep that night and that’s when I decided- my health comes first. I’ll dance when I can and do whatever I can, when I can.

I always beat myself up thinking, ‘Why can’t I do what everyone else can? Why can’t I be as active as them? And how come only I have to give up on opportunities to take care of myself?’ But I’ve made peace with the fact that I sometimes have to sacrifice a few things. Living a normal life is also an achievement of its own. I am much better now and I have fewer excruciating periods. It also lasts for only 7 days which is normal enough. I still need to take hormone tablets (although the dosage is not as strong as it was before). A week before my period, I still get depressed and feel empty. I feel like there is no point in life. I doubt myself and hate myself. But now I know that it’s only temporary and it will pass. During those difficult days and nights, I have a few people I rely on and reach out to. They make me laugh and feel better about myself. But I also tell myself this beautiful message whenever I’m spiraling  – all of us will have our lives interrupted at some point; whether it’s a clinical diagnosis, a heartbreak or any other trauma that brings us to the floor. We need to find ways to live in the in-between place, managing with whatever mind and body we currently have. 

From the author: A personal account on struggling with my health.