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Opting for a hysterectomy is a decision that comes with several layers. This deeply personal account of going through a hysterectomy is illuminating on many levels.
Opting for a hysterectomy is a decision that comes with several layers. This deeply personal account of going through a hysterectomy is illuminating on many levels.
When I finally decided to have a hysterectomy earlier this year, it was honestly an extremely difficult decision for me to make – despite my feminist politics, my education (that taught me what my uterus looked like, where it was placed and that it was after all just another organ in my body that could become sick) and my actual experiences of falling ill that urged me to believe that deciding in favour of a surgery was the most rational step I could take to getting well and feeling better.
But despite it all, I could just not help but dread the surgery, since I felt it would close an entire chapter in my life that was associated with reproduction, womanhood, and possibilities of motherhood, changing me as a bio-cultural being, as I had also been culturally taught to associate my femininity with my biological ability to have children.
It had been three years since I had re-married after a rather painful divorce. I had no children from my first marriage and it had been difficult for me to settle down to a new marital relationship after I had tried so hard to make my first marriage in India work. It had been difficult to accept defeat as my first marriage collapsed nearly after a decade or more of trying, and move to another relationship as a somewhat older woman – that also entailed leaving all that I had made as a ‘home’ in India till then, behind forever.
I felt misunderstood, ill-treated, resentful, crestfallen and frustrated, dealing simultaneously with an unresolved past and a daunting present, wherein whatever I did to adjust felt ‘not enough’…
As I moved to a new country, its laws and society also immediately attempted to efface my past and made new and fresh demands on me to ‘integrate’ and adjust into its mainstream culture as a foreigner, despite my rather painful background and biography that still smarted, felt painful, and sore. I felt misunderstood, ill-treated, resentful, crestfallen and frustrated, dealing simultaneously with an unresolved past and a daunting present, wherein whatever I did to adjust felt ‘not enough’ and reflected my past of having tried my best and failed despite all my efforts.
My life proved to be more difficult and lonely than what I had imagined, even as my second husband, kind and sympathetic in his own way, struggled to understand the actual extent of my experiences of having felt uprooted both in my Indian relationships and in our new life together, given its cultural and political context.
But behind it all, there was always hope for us both in it: the hope that we would somehow some day, with the help of modern medical advances in the field of reproductive health and obstetrics, be able to have a child and a family together. We yearned to have a child, and I constantly justified a difficult life to myself spiritually, by reassuring myself that something good lay in store for me: that I would soon be able to start a family and have a baby, especially when I felt particularly bereft.
We yearned to have a child, and I constantly justified a difficult life to myself spiritually, by reassuring myself that something good lay in store for me: that I would soon be able to start a family and have a baby, especially when I felt particularly bereft.
A little more than a year into my second marriage, the symptoms began, even as my gynecologist emphasized on the ‘good news’ of a ‘normal’ Pap smear and the absence of cancer, while announcing that I had middle to largish sized uterine fibroids. The excessive bleeding and blinding pain came together with a feeling that I would not be able to achieve a single normal activity during my now prolonged periods, as the world swung in front of my eyes in what felt like dizzying pain.
This, along with pelvic area pressure and back pain that almost left me paralyzed and unable to get out of bed on many mornings, even as the growing fibroids began to exert pressure on other internal organs and nerve centres inside my lower abdomen that led to a progressing amount of pain in my legs. I began to feel constantly distended and breathless as if my abdomen threatened to push my stomach up into my lungs.
This was followed by mood swings that came with the hormonal changes of extra estrogen production in the body as I felt alone in the world, going to and from work as I traveled to another city for my job. I would often cry to myself looking outside the train window thinking of the way God had punished and forsaken me. I felt angry with my life and completely miserable. I had begun taking medication for reducing the size of the fibroids (which would ultimately make surgery easier and less invasive), which had temporarily halted my symptoms, since I had begun suffering from anemia due to blood-loss by then and felt too much pain to even sit in a moving vehicle.
It was also the medication that was creating estrogen imbalance and mood-swings and depression, and other allied side effects, even at the cost of keeping the disastrous symptoms of the fibroids at bay, even if this medication could only be taken for a while, since medical research on the long-term use of these drugs had been inconclusive among human beings. Halting the medication led to the return of all the old symptoms with such acute vehemence that my family had to once rush me, bent double over, to hospital emergency. I was very ill, very miserable, and very angry.
I had various discussions with the doctors about whether removing just the fibroids would help if I wanted to have a child and whether I could conceive a baby that easily at 40 after all, given the size and location of the fibroids I had. I did not want to risk a uterine rupture during the last trimester of my pregnancy, after all. Neither did I want my tumours to grow back with the developing foetus, if I conceived at all, given that they often do so, when pregnancy pumps a great deal of nutrition into the uterus, providing the child lesser and lesser space for development and growth.
I did not want my selfish desire for motherhood to lead to the birth of a child with disability. My husband and I did not have permanent jobs even if we held good and meaningful University positions in Germany. These discussions with doctors also surrounded what were more sensible solutions from the perspective of my medical insurance in Germany and the kind of technical options available at the various hospitals across Berlin that would provide me with more permanent relief for my specific case (in contrast to options such as embolization or ablation that were more relevant for different age groups, different kinds, locations and sizes of the fibroids and their symptoms). Every woman was unique.
It would either have to be a uterus-sparing method, which would be of little use for me at 40 (at best) or risky as hell for me and my baby (at worst), with a temporary job and no permanent health solutions…
It would either have to be a uterus-sparing method, which would be of little use for me at 40 (at best) or risky as hell for me and my baby (at worst), with a temporary job and no permanent health solutions that would be any less expensive for my medical insurance to cover, that would leave me bearing the brunt. Dreams of having a healthy and natural pregnancy, childbirth and family were ‘out’ for me. I would have to instead choose a more affordable, permanent, and viable option that would instead serve my health in the long run, since I still had good recuperative powers at 40, if they still kept my ovaries intact (which they most certainly did).
It was just that I was going to be careful about not becoming one of those over-prescribed cases of hysterectomy, where I had heard horror stories of no any real consent or repeat my experiences of being forced into body decisions due to an absence of support or the presence of violent relationships. I was determined to remain conscious about my health and body choices, since it was important for me to feel empowered about my decisions.
Despite this, I did not want to impose my body choices (even though these were important health choices for me) on my husband’s reproductive life, since his choices depended on my decisions as well. I really wanted to do the right thing by the both of us and I still don’t regret the waiting-out I did on six months of medication that controlled my symptoms, as I requested him to come to terms with our situation just 2 years after our marriage, without feeling like a cad for being upset about having dreams of a family (just like I had) and the dead-end that awaited us and taking his time to accept it.
It was all very well to intellectually understand that dreams about family life and children were too romantic and the expression of bourgeois fantasy and hegemony; in many conservative societies, these uphold motherhood to an esteemed value and position that in turn ends up perpetuating patriarchal role-models for women that forced many into reproductive labour, when they wanted to do other and different things in their lives and careers and strove to be free and independent of marriage and motherhood.
And here was I, with every accessible freedom in life, striving for that one thing that would give me laughter and bring back freedom for me from what had become the imposing loneliness of constant adult serious engagement with my husband.
We also knew intellectually that we could adopt children, even as something recoiled within me, when I simply thought of how we often view adopted children as ‘replacements’ for biological children, when everything in the biological department fails in the end.
Both my husband and I were educated and political enough to realize and deconstruct our own dreams and fantasies. We also knew intellectually that we could adopt children, even as something recoiled within me, when I simply thought of how we often view adopted children as ‘replacements’ for biological children, when everything in the biological department fails in the end.
If I had been so interested in the value of adopting children per se, I should have adopted children, even when I could have my own biological children; I could have had a family of both biological and adopted children. The treatment of adopted children as the ‘last resort’ in my life made me feel that they could never be at par with what a biological child meant for me (first option). And I, as a self respecting parent of an adopted child would never find it in me to be able to explain this to my adult adopted child one day – that I adopted her, because I could no longer have a biological child, in the future; that she was the next best option because the first option failed.
My husband and primarily I, finally, decided for a hysterectomy for me. And though he supported the health decision for me quite positively and strongly in the end, it hurt him equally to know that from that moment on, at the age of 38, a lot of his dreams of having a biological family would also be over forever.
The surgery felt extremely difficult at a physical and psychological level, precisely because the medical fraternity treated my illness, my surgery, and the removal of my illness surgically so casually and almost as a ‘given’.
Once we had taken our hysterectomy decision, we began to face the actual surgery preparation, as the entire surgical procedure began to take on a life of its own. The surgery felt extremely difficult at a physical and psychological level, precisely because the medical fraternity treated my illness, my surgery, and the removal of my illness surgically so casually and almost as a ‘given’.
I could not associate the concept of my own body (with all its complex cultural symbols, which I had grown up with) with their concept of my body, even as they showed me what they were going to surgically do with the help of models and diagrams, explaining the stages and duration of the surgery, the personnel and anesthesia procedure. The pre-op preparation felt impersonal and administrative as I met my surgeon only hurriedly with a battery of consent forms to sign that dealt with the disposal of my uterus and my body, in case I died. I remember that I mostly felt too alone to even hold my husband’s hand.
I remember that I mostly felt too alone to even hold my husband’s hand.
I tried to square my shoulders against the possibility of death, even though I tried to remain conscious and laugh away the extent of drama in my thoughts, even while I knew that I was slowly separating and walking away from the concerns of daily life.
On the way to the hospital on the morning of the surgery, the taxi driver glanced at my stomach and asked me with a smile: ‘Kind kommt?’ (do you have a baby?) When I told him I had a surgery, he grew embarrassed and told me the story of his adult son who was mentally handicapped and was treated at the same hospital. We both grew speechless after a while till the hospital arrived, and he wished me all the best.
What was my concern about possible death I wondered; it was quite complex, I concluded. My concern I deciphered, was to remain conscious and aware at the moment of dying, that I was indeed dying, even if this was a very dramatic concern. I did not want to slip away unawares to myself. That would be foolish. Maybe my dog Tikiri, who had died 15 years ago, would come to fetch me. Yes, I thought. If I found Tikiri on my hospital bed, I would know of my own death. I would know: “Boss, get off the bed, and start walking away!” And walking out with Tikiri wouldn’t be too bad!
But all these dramatic thoughts were to change all over again.
Even though the sudden surgical preparation and the speedy wheeling away to the OT gave me no time to think at all, I was in for a pleasant surprise. I met a very pleasant and dedicated team of doctors, anesthetists, surgeons and nurses, who immediately surrounded me. They assured me in the most heartfelt and gentle manner that my comfort and well-being was of the highest and deepest priority to them, and that I would have their complete attention for the next four hours.
Despite the surgical environment, the OT stretcher, and the alienation and fear that I had expected, I felt oddly, deeply comforted and surrounded with care.
They would pay attention to every slightest twitch of my body and every muscular spasm that communicated distress or unrest. I saw earnest, committed, and deep seriousness on their faces and eyes about my health and body, as if they lived for making my surgery a success at that moment. And even though the extent of their dedication and commitment felt unbelievable, I inadvertently and slowly began to relax, as someone pushed a pillow under my head. Despite the surgical environment, the OT stretcher, and the alienation and fear that I had expected, I felt oddly, deeply comforted and surrounded with care.
Instead of fear for the surgery, I began to feel confident, as they began checking and plugging in their devices and preparing for the surgery. They asked me often if I was comfortable as I saw many pairs of concerned eyes, turned the other way around, when they spoke from behind me, blinking seriously into mine. I suddenly felt that it was here, at the table of this surgery that I was my least bit lonely. I was surrounded by people who were the most dedicated and committed to making me feel healthier and happier in my body and it was they, whatever their concepts of my body, who would definitely take my illness away. It was from nowhere that a sudden spurt of trust for them grew strong in me, as I felt that I could give my body over to them, as I slept.
I suddenly felt that it was here, at the table of this surgery that I was my least bit lonely.
There was no dualism here in this highly professional German team at Charite, Berlin, between what we understand as medical professionalism being separate from humanity (a dualism evident in movies such as Munnabhai MBBS). I understood my comfort and good health and peace itself to be part of their science and professionalism. They were not half doctors and half humanists, divided neatly against each other; their human care was their science and without their science they could not have been doctors. They were scientists only because they exuded care, and there was no dualism in this. Or this was my experience of it.
I forgot about Tikiri as the anesthetist said: Jetzt schlafen Sie ganz ruhig! Brauchen Sie kein Sorge! (Now you can sleep in absolute peace and without any need for worry!). I became convinced that nothing could go wrong here. I no longer felt afraid or lonely. I had passed from the grey zone of waiting, pain, indecision, and emotional conflicts to the OT, where I met with an extent of dedication hitherto unknown to me in the world of social relationships, where my desire for familial love had only met with resentment and attempts at uncomfortable management.
The surgical team at Charite returned to my body (the only ‘me’ I know) the respect and care of what a biography of subsequently denied self-love and identity crisis had robbed away.
The post-op care was similar. Nurses remained extremely kind and supportive, checking on me through various times through the night and day. Even the older lady in the next bed helped me around. The hospital team had me back on my feet in a matter of three days after the hysterectomy and discharged from the hospital over one weekend, hale and hearty.
When my surgeon came to meet me, he told me how well and fast the surgery had been, how little I had bled and how I could now look forward to a healthy life without oppression from internal fibroids that caused pressure on internal organs or on nerve centres, that had caused me so much pain and bloating for two years. There was no need for any hormonal treatment either, he confirmed. Von Unserem Seite, sind Sie Frei! From our side, you are free (to go home!) he said!
And there had been no Tikiri on my bed either.
Meeting my husband, our friend Sujoy, and mother-in-law, who had come over to help us with our household felt like a new lease of life, a blessing! Walking outside the hospital after being discharged, in the mellow winter sunshine, I felt transported and alive. And watching the taxi driver shifting gears on the way home, it felt like I had been on two sides of a steel barrier, walking in dead but coming out alive. Looking at the shining, relieved, and slightly tired and ruffled faces and clothes of my family, (since they had been rushing around home and hospital in the past four days) made me feel more alive than I had ever felt before.
Looking at the shining, relieved, and slightly tired and ruffled faces and clothes of my family, (since they had been rushing around home and hospital in the past four days) made me feel more alive than I had ever felt before.
I felt quiet, introspective, cheerful and peaceful, as all my mood-swings and emotional turmoil dropped several considerable notches lower in their intensity. I slept better, felt better, and amazingly enough, began working again, sitting at my computer as my mind felt clear and free from any physical or emotional confusion. I had suddenly ‘gained distance’ from my pre-op life and came to realize what emotional closure the hysterectomy had afforded me on my past and my present problems, and that this, henceforth, could be the real beginning of family life with my husband… without ’emotional obstruction’ from any family-oriented and childbirth goals to disturb what would be a real introspection of our intellectual or creative pursuits.
Our relationship could have real potential and we could not realize what this potential was and explore it, if we were so busy hankering after something else that we did not have…that something else that the whole world seems to enjoy…if we kept feeling so sad, angry and left-out all the time. Maybe we had other beautiful things to enjoy. And I needed emotional closure to realize this worth of my life and relationships.
But then I was to have one last dream of Tikiri.
I dreamed of how my parents, on discovering him to be old and ill had abandoned him on the roads, only to bring home a new and identical Tikiri, with whom they expected me to live, as if nothing had happened. When I questioned them about their cruelty, they denied that it was cruelty at all, since Tikiri could have sniffed his way back home, after all. He was enjoying his last freedom in his last days and we had to let him go and love the new Tikiri instead.
I woke up with tears in my eyes.
We all love the important organs of our body, with which we grow like siblings, since these parts of our body have life-dreams associated with them. A singer’s voice is important to her, just like a writer’s hand is or a sportsman’s legs. Tikiri was like an important sibling to me, since we grew up together, and maybe I had spent too many years imbuing the one organ in my body with the dreams of having a family, like siblings that would salvage my identity.
It had grown with me and my dreams to enormous proportions, and its loss, as it was burnt in some unidentified crematorium was identifying itself with the grief of letting the memories of my dead sibling-dog, (now sick, dying but also free) go free at last. I was the new Tikiri: reborn to my own life and celebrated by my parents.
For us women, a hysterectomy may also grow larger than our healths, our relationships, and sometimes our happiness, even as it begins to define our gender or its absence.
But it was also cultural. For us women, a hysterectomy may also grow larger than our healths, our relationships, and sometimes our happiness, even as it begins to define our gender or its absence.
I found writing this piece really difficult because so many things in it were of a personal nature, but I wanted to share it with a community of women for four specific reasons:
A lot of the ‘good results’ of hysterectomy really depend on whether you have had the opportunity to take this journey and explore all your personal issues in the fullest possible sense. Do meet a counselor if you need to.
But just in case, you have all the cons in your basket, it can help you to remember that parenthood desire, or what they call ‘Kinderwünsch’ in Germany, is culturally induced, to which most of us, as both men and women respond strongly. Just in case you are faced with the cons, it helps to remember, as it helps me today to realize that the goal of building families is also to spread love, which one can do, even if the technicality of being able to give birth does not present itself to you.
Pic credit: Image of woman via Shutterstock.
Deepra Dandekar is a feminist historian working on narratives of religion, community and violence in India, currently living with her husband in Germany.
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