“You should go to the US. Men there are open minded. They won’t ask you to get pregnant. Befriend men, and tell them about yourself. If someone understands, you can be with them,” said the well meaning relative.
I smiled politely wondering if I should tell her that I do have empathetic male friends for whom I have no romantic feelings. I was annoyed that pregnancy was yet again at the centre of discussions about my health. No one, apart from my gynaecologist, had so far asked me if I even wanted to have kids. And she too had asked me that in the context of marriage.
How do I tell these people that I had decided long ago, at the age of eight, to adopt a baby girl? At 13, I had decided that I would only marry someone who accepted my being a single mother. Call it the whimsy of a little girl but I see a spirit that was already at odds with society’s expectations. How can this person suddenly turn into someone who would cry over pregnancy?
But back then, I hadn’t contended with an endometriosis diagnosis.
{{/usCountry}}But back then, I hadn’t contended with an endometriosis diagnosis.
{{/usCountry}}I have been sick since I was 13 years old. But I was also a child who focused on her grades. But even there I didn’t meet my own standards because of cancer. Then, during and after chemotherapy which resulted in repeated pancreatitis, I had borderline diabetes. I stuck to a strict diet long before people began obsessing over protein and cutting down on their sugar intake. I didn’t want to add insulin to my list of injections. I didn’t want to be medicated for the rest of my life. When I completed my college degrees, I suffered from a crisis.
With cancer, I had focused on living in the present, and was completely unprepared to answer the question, “What if I have a tomorrow or say, another 20 years? What then?” As I grappled with internships and my first job, I began suffering from anxiety attacks. I quit the toxic workplace that made me beg for my salary, and left me isolated. 2020’s lockdown and the new normal that followed came as a welcome surprise as things became digitally accessible.
By then, I was already working on my triggers, looking at childhood trauma, and choosing to heal for my present just so I don’t have to deal with similar issues in my thirties and beyond. In August 2021, I realised I had gone through a whole year without an anxiety attack. I looked forward to beginning my life again, to applying for jobs, moving out of home once more, and perhaps dating again. That’s when I was hit by an endometriosis diagnosis. Before I could learn about the condition, my spirit was already faltering. I had made myself better; why then do I have this new diagnosis?
Disguising my nervousness, I joked, “So if you remove the cyst and my ovary, I’d be off the marriage market, right?” At 27, I was tired of telling people about the kind of man I wanted and hearing, in response, that my standards were too high. I wasn’t keen on aligning with patriarchy.
The general practitioner said I’d still have my other ovary so I could have kids. When I went to the gynecologist, she said, “No need to remove the ovary, it’s just a small cyst. Let’s try oral pills. There is no cure to this. Even if we remove it surgically, it will return.” Her plan was to reduce the cyst by stopping my period. Apparently, the condition is usually caused by retrograde menstruation ie when period blood flows back into the body. “So, we will pause that,” she said. It sounded simple enough, and over the next few months, I absolutely loved not bleeding.
I began searching for fiction on endometriosis; literature students mistakenly believe there’s a book on everything. I didn’t find anything. Many Indian platforms talk about PCOS/PCOD but there’s nothing on endometriosis beyond a few generic posts on Women’s Web. I began looking for lived experiences. Instagram led me to a dark place with women across the world either suffering in surgery or disabled. I read more about the condition, and two symptoms hit me: pain during sex and infertility.
So, I wasn’t crazy. I had not been sexually involved for a few years because I was terrified of the pain I had experienced towards the end of my last relationship. Even when I had wanted it, I couldn’t endure the sharp pain that felt like I was being cut from within. The guilt of not wanting intimacy had eaten me up and though my partner was initially supportive, he eventually snapped. “Why did he say it was alright when it wasn’t?” I wondered. How was I to solve this? At that point, fearing a moral lecture on premarital sex, I was terrified of going to a gynecologist.
So, the endometriosis diagnosis was a relief. I understood then that my body’s rejection of intimacy was its way of protecting itself. But I wasn’t prepared for the possibility of infertility. I had always wanted to adopt but had not ruled out pregnancy if I found the right partner. That the diagnosis had taken away this choice left me bereft. At night, I cried for hours though a part of me insisted this was my internalized patriarchy tormenting me; I should be strong as a feminist, my inner voice said. But I wasn’t.
When the oral pills didn’t work and more and bigger cysts appeared, I laughed again. We went for a second opinion. This time I got the whole picture, or so I thought. There is no cure, symptoms can be managed, I was told. You might be infertile but there’s always IVF. I asked if I could have sex. “No, it will make your internal organs further stick together further,” the doctor said. “Will removing my ovaries help?” “There’s no need. You are young and unmarried,” she said as though childbearing is the only acceptable reason for sex.
If sex made me suffer, how was I supposed to get pregnant? Also, do my unborn children matter more than my health? Sitting in that gynecologist’s cabin meant witnessing myself being reduced to a womb; and this kept happening over multiple visits.
As a result of all this, I have complex feelings about relationships. How am I to tell a man on our first date that I can’t have sex with him; that if I do, I will be in pain, and not the kind that turns into pleasure? More importantly, how do I live a life without sexual pleasure? It’s one thing to be disappointed by men who cannot pleasure you; it’s an entirely different thing when your own body rejects the possibility of acting on your desire.
This was my life for the next few years despite the surgery that removed the accumulated endometrioma and fitted me with an IUD that secreted synthetic progestin to manage my symptoms. Five years since the diagnosis, there are days when my entire lower body aches and I cannot move or sleep on my back. Different heating pads make it to my wish list and I get excited when I buy a new one. I use gun massagers at times. A vibrating, massaging heating belt is now a constant companion to my waist and hips. I cannot focus and my memory has deteriorated. Doctors around me tend to dismiss the correlation between chronic pain and changing brain chemistry. I am always tired however much I sleep. As a social person with a body that needs to isolate and rest, the idea of a full-time job depresses me. And I am constantly told to not lose hope; that there will be someone who will marry me and that I might still have children.
That’s it. That’s the purpose of my life: to marry and have children.
People assume that I am hopeless. I am aware of the ‘burden’ I have become to myself; of the identity shift from being independent to needing help to get out of bed. When I’m in pain, I crave the intimate hold of a partner, someone who sees me and accepts me in my most vulnerable state. But how could I possibly put someone in a position of lifelong caregiving in the absence of physical intimacy in a romantic relationship? That feels like torture. In fact, the idea of not being intimate with someone I love seems torturous to me too.
Friends and family assume that I do not talk to men. I do. I know that men in their thirties want to ‘settle down’, ‘marry’ and have their ‘own kids’. I have not yet been rejected for being sick or for the plausible scenario of infertility. But when I talk to men, I don’t align with them on marriage. And if they are keen on having children, I walk away. I’d never want someone to give up on their dreams for my illness. Now, I walk away from those who suggest alternatives to pregnancy too. What’s the point of raising a child when I cannot be a fully present mother?
I believe in love and I want a partnership. But I am scared of being treated badly because I do not bring what’s expected to the average marriage under the patriarchy that governs all human societies. I am also afraid of becoming an easy target of those who assume sexual freedom implies that a woman doesn’t belong to one person but to everyone.
On dates, I’m aware I don’t make the best impression when my answer to most life questions is ‘I don’t know’, especially as I’m now in my thirties. But I truly don’t know. I cannot commit to plans or deadlines because I cannot rely on my body. I live with utter uncertainty, and I grieve the life I could have had without chronic illness. This loss is an everyday experience. To have an ambitious mind and a high libido in a body that betrays me has put my career and relationships at peril.
This is my reality and I am finding ways to live with it. Will I absolutely jump at the opportunity of being with someone who doesn’t want to marry and understands chronic care giving and has a practical-flexible plan to cope with his life beyond ‘people can do anything for their love’? Likely. Will I say yes to someone who’d want to be creative with intimacy and wouldn’t imagine wanting me to be in pain to be pregnant? Of course. Would I find this person if I throw a stone across the world? I don’t know.
What I know for certain is I am more than a womb, just like I am more than my illness. I am learning to continue living; I am learning to build a career and maintain social relationships. I am trying to be.
Note: Everyone’s experiences with endometriosis are different. My scans are normal but I live with debilitating pain. Others have deep infiltrating endometriosis and no symptoms. It can vary, and no one experience is a standard experience. I cannot imagine raising kids or desiring pregnancy, but I understand many women want it and grieve a whole different kind of loss.
Akankshya Abismruta is an independent writer.