Month: November 2014

So long, uterus, and thanks for all the feels

My love-hate relationship with my uterus started when I was 11. When that first bleeding came I was thrilled, because it meant I was a big girl, like my two elder sisters whom I idolised. But it also meant a sort of negative attention that felt like an albatross around my neck. The household I grew up in was one that was in flux between a traditional order and a more modern one. My paternal grandmother ruled with what she thought was an iron fist, my mother resisted quite creatively and courageously when she could and my father tried to walk the thin line between the two, discovering as always that when you try to make everyone happy you usually manage to piss everyone off instead. What this has to do with my menarche is that it meant my sitting isolated from the family for 3 days. A menstruating woman is an unclean woman in Hindu practice, and so you weren’t allowed contact with anyone, couldn’t touch any of the common household utensils, couldn’t sit on any fabric-covered furniture, couldn’t enter the prayer room, and had to maintain this state of isolation until the fourth day when suddenly you were miraculously clean. Thankfully I didn’t have to do this for very long. My eldest sister had always fought my grandmother over this oppressive practice, but had succumbed to keep the peace as long as it was just her, my second sister and my mother who had to undergo the isolation. When I was 11, my eldest sister was 20. It was an age at which I remember her as being at her most powerful. She is powerful now, too, but in a more peaceful way. At that time, she looked to me like an avenging goddess, whom no one could dare to suppress. To her, I was a baby sister, to be bossed around, yes, but also fiercely protected. And she rose up in flames of righteous anger when she came home that day and saw me sitting in a corner. She told me to get up, told my grandmother in no uncertain terms that this practice was stopping now, and quelled my parents with a single glance. At least this is how I remember it. My grandmother sulked for a while, but no one ever had to be singled out like this again in my house just because they were menstruating.

Yesterday this now peacefully powerful eldest sister sat next to my hospital bed and massaged my head gently but firmly as I drifted in and out of a drug-induced sleep. I had gone through five years of turmoil with my uterus: heavy bleeding, pain, migraine. And every treatment for the bleeding was – according to my gynae – “medically successful”, because it did slow the bleeding. But the side effects seriously affected the quality of my life. My legs would balloon up, I had bouts of depression and near-suicidal thoughts, more migraine, rapid weight gain and more. It didn’t help that I’ve been grappling with graduate studies over the last few years. Every visit to the gynae cost money, as did the pills I popped and the IUD I had inserted. Finally, with the support of my gynae and my husband, I came to the decision to have the uterus removed, and the deed was done yesterday.

It wasn’t an easy decision. Not because I had any romantic illusions about the sanctity¬†of my uterus in defining my femininity or my humanity. Nor even because I thought its work was not yet done – if I have not had all the children I wanted to have I have at least had two very loved and very special boys who I (probably somewhat hubristically) see as my greatest achievements. The difficulty of the decision was mainly because of intense fear of the unknown. I read compulsively, asked questions equally compulsively, checked and double-checked with my gynae. Talked to the women in my life who had gone through the surgery, mainly to find out what I could about their decision-making process. Looked up online forums for the same reason. So many women with so many stories. So overwhelming! The large majority of the stories were told through what I will call the lens of expert-established need. These of course carried themes of intense suffering, and quite often great distress at the news that the uterus would have to be removed. But they also embedded themes of validation and justification. They may have had their uterus removed, but it wasn’t just because they were suffering. It was because the doctor said flat-out that it needed to go. Of these stories, among the most heartrending (though each was sad in its own way) were those of young women who had not even had the chance to decide if they wanted to bear children yet. That choice was taken out of their hands. But there were other stories that were told through what I call the lens of self-determination. There were fewer of these, possibly because (from what I read of these stories) there was simply less uncertainty and angst. These were women who had discussed their cases with their doctors, and arrived at a decision to undergo the hysterectomy – not because there were no other options, but because they had, for various reasons, deemed that this was the best. There were of course themes of suffering. I even came across stories of trans people undergoing the surgery, and that opened up a whole new world of suffering to my knowledge-seeking eyes. There were also themes of validation and justification, but these were of course very differently expressed.

What took me so long to make the decision was not knowing on which side my story lay. I didn’t have the anguish of a hysterectomy thrust upon me. My gynae in fact suggested trying the IUD again (the mirena – in case anyone wants to look it up). And I was the only one who seemed so bothered by the side effects of all the hormone-based treatments. My surgeon even suggested that I put my feet up if they were swollen, and that if I was depressed I could see a psychiatrist. Or that if I was gaining weight rapidly I could try eating less and exercising more. In fact it amazed me how insular the perspective was. At the same time, I can’t pretend that I don’t know this about medical science – that there are things it can do at any point in time, and things it can’t do. But these sorts of conversations made me even more determined to find out as much as I could, to advocate for myself, and to make a decision that I could live with. I was assertive in seeking the information, and I would do it all again in a heartbeat for myself, and anyone I love. I don’t believe there is any such thing as being too assertive when you are asking questions about major surgery, and any doctor who gets put off by my questions or my “tone” is not performing my surgery. Thankfully, my doctors rose to the occasion!

I read papers in medical journals about how difficult it was to ascertain things like amount of bleeding – most gynaes will ask you how many pads you went through. But the fact is that you don’t always change the pad only when it is full. Also, clots are a game-changer, and completely skew your estimates of blood volume. Even pain differs from one woman to another, and the decision about how quality of life is being affected cannot be standardised. One paper came to the conclusion that in treating menorrhagia, the best rule of thumb for when to perform a hysterectomy was when the patient actually asked for it herself. In fact this was also a good indicator that the surgery would successfully end all the symptoms and side effects, thereby increasing quality of life (apologies for not linking to the paper. I will try to find it later). No matter how much I craved the external validation of an expert-established need, it looked like I was going to have to take this into my own hands.

And so I decided to go ahead with it. The night before I was admitted, the family had dinner out and shared a bottle of wine. My son raised his glass and told his brother: “We’re saying goodbye to our first home.” It made me laugh. But later on in the night, I started to cry and couldn’t stop crying. I cried almost the whole of the next¬†night as well, in the hospital bed, before the surgery the next morning. As reflexive as I try to be, there was a deeper level of emotion that I simply hadn’t reckoned with. Again, it wasn’t because I was attached to my uterus (although I did wake up with a start at one point from a dream in which my sons were standing next to a few more children – all the children I might have been able to bear). I was really terrified about the surgery. As I was being wheeled off, my husband got my son to take a photo of me. In the photo, I am laughing as though I haven’t a care in the world. I know that I was quaking beneath the smile.

surgery

The whole time I kept asking myself – am I making the right decision? Just before I went under the general anaesthesia, I held my surgeon’s hand and said “I trust you”. And the next thing I knew I was waking up in recovery with a pain in my abdomen. Somewhere was the thought that since I had had the surgery done vaginally there was no incision on my abdomen. Where then was the pain coming from? According to the surgeon, my uterus had turned out to be much larger than he’d expected, which probably explained the intense pain I had experienced with each heavy bleed, and indicated a form of endometriosis. But he will know more after looking at the full report and will go through it with me when I go for my follow-up appointment. I am looking forward to asking more questions and finding out more about what was going on with my body. Like any research project, the real fun is in grappling with the data. And as a friend of mine pointed out, while we think medical science is modern, that diagnoses are sometimes made after the surgery makes it post-modern as well!

So long, uterus. I learned so much about myself from grappling with your first awakening, feeling you grow my babies, enjoying your orgasmic contractions, and making a conscious choice about removing you from my body. It’s been quite a journey. Thanks for all the feels!

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