Chickens On The Inside - Periods, Pain, Endometrioma, etc!

I was up on many nights, overthinking, searching the internet for information on ovarian endometrioma. I ended up watching a video of an ovary removal surgery. All I could think was, we look like chickens on the inside!

My lower back was hurting for a couple of days now. My go-to response to it was, I can take it. Over the years I made it a point to remind myself that just because I have a high pain tolerance threshold, it doesn’t mean I have to tolerate it that long before making it a matter of concern. I kept telling my mom, it hurts exactly as it does during periods. There’s a cramp in my right leg too. It was weird because I was nowhere near to the call for battle – that’s what I like to call the 48 hours before I begin to bleed, the time when it feels like nothing in my life will work out ever again and I’ll die in living hell. It’s actually a thing! But, there I was, unable to move from bed, unable to find a position that will help me sleep, almost wanting to pass out somehow and still thinking, I can take it.

Here’s a brief history of my tryst with menstruation:

I was completely ignorant and ultimately pissed that girls had to bleed while boys simply grew beards! (Back then I wasn’t aware of the gender spectrum and hence, haven’t used cis/trans here.) Irregular periods in year one (I was 12) were followed by an absence of bleeding a few months before I turned 14 because a cyst made up of cancerous cells was formed near/on my left ovary. The cyst went away with chemotherapy and gratefully, yet sadly, my body began taking its revenge for not having unprotected sex by the time I turned 15.

I mean, c’mon body! I wasn’t even aware of the relationship between periods and pregnancy or sex for that matter! (It is important to state in parenthesis that chapters on reproduction in school didn't help me and I was horrified after watching porn at 19.)

Anyhow, all was well till I turned 20. I developed a very serious urinary tract infection then. It was during the months of diagnosis (because hey, how can I have a simple diagnosis in a go?) and treatment that I had a brief encounter with period pains and cramps! Believe me when I say I was one of those very fortunate people who didn’t have any kind of pain or felt the need to rest during periods. By the time I was 22, pain visited me with alternate cycles. Over the next few years, the only way I knew how to deal with such pain was to pop some meftal before (almost) passing out.

The pain that I suffered from felt nothing less than my body going on a war with itself. It drained me so much that I couldn’t even bring myself to stand, let alone function. Cold chocolate drinks helped but it was not enough. I mentioned it to doctors when I visited them – the bloating, the lower backache, the cramp, the severe pain. Everyone said it’s pretty normal. At max, they prescribed meftal.

I didn’t emphasise digging further because I was aware of many horrific period pain stories where people tore up bedsheets! These stories were so common. Even though I didn’t have such pain for almost ten years, I couldn’t dare to say, it’s just periods!

There’s little that I learn from history!

The pain had appeared a week or two ago as well. I ignored it considering it wasn’t even worth mentioning. I had finally begun exercising and I didn’t want an excuse to stop. That thing people say about not learning anything from history is true – I didn’t learn anything either. Over the years I have been rather cautious about the known hotspots for pain in my body – lest leukemia returns, cancerous cells travelling through my blood vessels, getting stuck at joints.

This pain travelled too, from my lower back towards the portion where they look for kidney during the ultrasound. When I finally went to see the doctor, he sent me for tests to check for kidney stones. The x-ray showed nothing.

As I lay uncomfortably (as always) for ultrasound, turning as per instructions, the examiner asked, do you have severe pain during periods? When I replied in affirmation, he said, well, that’s the problem, isn’t it? I didn’t make much of it. I sat outside after the test. My parents went inside to get the reports.

When they emerged with the report, blood had drained from their faces. It terrified me. We got into the car. I couldn’t find a way to cut the tension. My parents kept exchanging passive-aggressive comments – We cannot take her health lightly. We have to pay more attention to her. We should get regular check-ups. I couldn’t take it anymore so I snapped, Will you tell me what’s wrong with me?

My mother finally said it’s a cyst. I relaxed. Cysts are not uncommon. In fact, some of my friends suffer from PCOS. So, I didn’t make much of the diagnosis. When we returned to the hospital, I went to pee (absolutely hate ultrasounds for this). Later as I entered the doctor’s cabin, I saw the blood was drained from his face as well.

What are you not telling me? Is it something big? It’s just a cyst, right?

The doctor drew a rough diagram to explain what an ovarian endometrioma is and how the urinary tract is involved. He mentioned that the only solution to it is to remove the ovary to get rid of the tumours along with putting a stent in the tract to relieve the pain. I dealt with it as I deal with any situation that needs serious attention – humour! I had been listening to so much shaadi-talks in my friends’ lives that I blurted out – Ah! So I am even less eligible for marriage and getting pregnant! Fantastic!

Consider it a chicken leg and eat it, the video I saw looked like raw chicken though!

A little later, I managed to ask, Was it my fault? Did I do something to cause this? The doctor, concerned, sat me down to explain that I have no role to play in it. We don’t know why it happens. Sometimes it just happens. I was okay, the news hadn’t sunk in. Yet, I couldn’t understand why everyone was so worried. There was a solution to the problem. Surgery could fix it. Why was everyone acting as if I were dying!?

What do you call normal when you have no memory of it?

It pissed me off as I saw my father being on the verge of crying as he took me for some more tests. According to him, we had some normal years and now another misfortune has befallen. This enraged me for I have not even felt remotely normal since the symptoms of leukemia showed up in 2007.

Something or the other is always wrong with my body. I live in the fear of being diabetic because chemotherapy fried up my pancreas over and over again. Moreover, in the last few years, I have had enough panic attacks to know I never want them again. In the end, I live with conditions that have no reasonable explanations for appearing in my body – slowly accepting that ‘why me’ isn’t a question that helps me!

We returned home by noon. For once I was relieved that my mother took on the battle with my father, conveying that nothing has been normal for me in years. 'Everything is severe in her case, rarely is she ever fine.' There was support, somebody understood it. It has been awful to pretend to be normal over the years. To most people, cancer happened in the past. Why should it be brought up again and again? I often don’t have it in me to explain, not anymore.

A couple of hours later my parents relaxed. Apparently, the test for figuring out if the tumours were malignant turned out to be negative. The blood had drained off their faces that morning because they assumed these tumours on my ovary had something to with leukemia – or were an indication that cancer is returning.

Panic attacks and living with an anxious mind ended up making me grounded in reality

For once, my biology studying ass facepalmed! Every tumour need not be cancer! How could they be so foolish to assume the ‘known worst’! Later, I was told that it was all a misunderstanding. When they got the report, my father had a brief chat where he mentioned that I had developed a cyst as a symptom of leukemia. The ignorant unaware person who handed him the report responded that it might be so again!

I am used to being the one who overthinks, is impulsive, overreacts, and behaves unreasonably. That day, I realised, I don’t really do that without occasion – a pat on my back! These are the things that can be diagnosed, tested, managed if not cured. It’s not a voice inside your head telling you that you don’t deserve to live – you cannot reason that voice, you cannot see it. It’s that voice that’s scary, not a physical illness! (Someone needs to tell me just because I have had such a voice controlling me for years, it doesn’t mean I should take physical health lightly.)

It took a few days for the news to sink in. We went to a gynaecologist eventually (it should have been the first step, I know!) who assured that the ovary need not be removed right now. She prescribed me pills for three months to stop my menstrual cycle and observe the change in the size of the tumours. Again, it took me a while to adjust to that. I googled endometrioma to distract myself from the shame of feeling that I will be less of a woman without an ovary.

The social conditioning seeps in! 

There were so many questions about sex life, infertility, pregnancy, etc. I had to constantly remind myself that I don’t even have an active dating pool at the moment – this is easier to state than accept that I don’t get attracted to people easily. It is not happening right now, I don't have to think about any of it! I managed to drown myself in a project that knocked on my door the same day that I got the diagnosis. It helped a lot, to feel useful in that time.

In the initial hours after diagnosis, I ended up making scenarios where I am socially less acceptable as a woman. A long time ago I was told by someone in the extended family to not mention cancer to people, it might make it difficult to find a husband. I was nowhere near accepting endometrioma. When I expressed my fears to my mother, she responded in a straightforward manner. Your father and I had decided that we will not hide your history. If someone has to accept you, they’ll accept you as whole. This sort of helped.

It sounds ridiculous now because I am still the person who seeks partnership without marriage/labels – not open for discussion!

Yet, my socially conditioned brain was killing me back then. It kept me up at night. A rebellion had already erupted within that said – even if I were having sex and it hurt (as it might when one suffers from this condition) I wouldn’t have gone to a gynaecologist for all the taboo that surrounds the subject. Again, too aware of stories that come with awful gynec visits in India where pre-marital sex is still looked down upon and doctors continue to ask ‘Are you married?’ to gauge a person’s sex life.

The thought didn’t help because these tumours might have been growing for about 3-4years – an early detection considering it usually takes 7-10years. The fact that I wouldn’t have made a gynac appointment a few years ago or even now if I were on my own – it sort of bothered me a lot! 

So much for claiming to be unconventional!

More hospital visits, a lifetime on pills – who knows?

My prescribed medication is about to end. I foresee another round of tests and doctor visits. It doesn’t bother me. I spent most of my teens in hospital which oddly turned it into the most comforting place on earth. A couple of days ago I realised that these three months have actually been nice because I didn't feel – my life’s never going to change. This feeling came upon me before periods. I was aware of it yet I couldn’t shake it away. I am so glad to have not felt that.

Initially, I didn’t want to talk about it apart from letting a few people know. To have that company where I feel heard when I expressed my fears helped plenty in the first month. It was scary, so much so that I ended up texting my doctor in CMCH Vellore to confirm the course of treatment. I was terrified because I saw dialogue on PCOS and couldn’t find much on endometrioma. I definitely needed the time to process it.

In the month of August, I was extremely pissed at people in general who chose not to speak about their lives, be it diseases or abuse. I was hesitant to talk about it too because of a few bitter experience of telling the cancer stories – people find it easier to call someone strong but won’t listen to the emotional turmoil. I was pissed because I needed visibility, and had no interest in being an inspiration (I already played this role as a teenager).

I judge people with the mindset that these stories are told to garner sympathy and pity. It's just sad and heartbreaking when it comes from people you consider close friends. There’s power in stating one’s reality as it is. It gives a person the strength to acknowledge and accept the situation s/he/they is in and find ways to deal with it. It means plenty to feel seen and heard in a world that chooses to showcase a life full of pretence! 

This might begin another series of blogposts like leukemia diaries or 'making sense of what's happening inside my head.' Turns out, being actively sick gets my writing train moving!