From denial to a course of treatment that does not relieve the symptoms, endometriosis is a debilitating condition which needs to be discussed more.
I lay motionless with my eyes fixed on the ceiling. A plethora of emotions flooded into my mind. Anger, discomfort, misery, despair. I’m tired and desperate. My mind has become numb from constantly thinking of different ways to ease the never ending pain that has become a part of my existence. ,bb ,’=It is my reality. This pain is an old friend, a loyal friend which refuses to leave my side, withstanding every possible intervention on earth.
Four years ago I was diagnosed with endometriosis, an extremely debilitating condition in which the lining of the uterus grows outside the uterus and mimics the monthly cycle of breaking and bleeding. Since it finds no exit, it keeps growing inside the body, gradually turning into a cyst. It’s a painful disease.
It all began with a rather unusual episode of excruciating pain in both sides of my lower abdomen followed by bouts of vomiting and dizziness. And this continued month after month. Something did not feel right but I kept pushing away all the warning signs my body was showing, trying to get on with life as if everything was okay. Everyone around me kept reassuring me that it was a normal phenomenon, it was all in my head. Must be something I ate; must be the erratic work timings; I need to walk more… I was in denial and ate a truckload of painkillers and antacids just to tide over the most horrid five days of the month. I had a tough time getting my period pain acknowledged without being scoffed at. With each passing cycle, the pain became more resolute.
It was 11 agonizing months before the unbearable menstrual pain took me to the hospital to for a checkup with my gynaecologist. After undergoing a battery of tests I was informed that my uterus, fallopian tubes as well as both my ovaries were diseased. I almost had a near death cancer scare when the markers came up way higher than normal. This was 2014. The usual line of treatment was a round of hormonal injections followed by a laproscopic cystectomy, followed by more hormonal injections. My doctor authoritatively declared, ‘Get pregnant.’ It’s known to naturally reduce the level of estrogen, the monster that fuels endometriosis.
Having a baby was the last thing on my mind. Dragging a child into this world just to alleviate my health issues didn’t exactly appeal to my motherly instincts. How could I nurture a living being when I could barely get out of bed by myself? There was no question of conceiving. Nor did I go for the hormone therapy. I started talking to relatives, friends, colleagues, hoping someone would know someone who’d have the faintest idea about an alternate therapy to get the blood monster out of my body. I met several practitioners and tried several treatments. Homeopathy, Ayurveda, hypnotherapy, naturopathy, pranic healing, aura cleansing, acupressure/puncture, hot bag, cold bag. You name it! Like an obsessed lover I spent most of my time surfing the internet to know everything about my muse, endometriosis.
2015 marked two years of torturous periods and one year of haplessly trying to end my misery. With each passing cycle, I grew more and more depressed, realising I was losing the battle to get better. My work and marriage continued to suffer. I had turned into this volatile, edgy person, extremely envious of every woman around me who walked and talked like a normal human being during her menstrual cycle. My parents and my husband stood by me like a rock, helping me cope while silently bearing my violent outbursts and desire for isolation. Until one especially excruciating night when my mother heard me say, ‘I don’t want to live any more. Please kill me and liberate me from this pain.’ I was depressed. The pain had got the better of me. I felt useless and dysfunctional as a woman. I didn’t want this body, this gender, this life.
That was early 2016. The next thing I knew was I was at my doctor’s, along with my husband and parents, having just given my consent for surgery. I vividly remember that night. I couldn’t stop crying. I was shaken and deeply disturbed at the thought of a painful surgery. But then this could be my one last chance of getting free from the clutches of pain and misery. I underwent a cystectomy in 2016 and took hormonal injections for the following three months which stopped my periods temporarily.
Those three months were the best months of my life. No blood, no cramps, no more aversion to food, no low blood pressure, no more suicidal thoughts, and above everything, not even the slightest trace of pain. ‘Gonadotropin releasing hormone analogue injection’ was my new best friend!
The effect was short lived, of course. Today it’s been almost two years since my surgery and I still can’t confidently say that I’ve been cured of endometriosis. The truth is that there’s no magic bullet. The aliens still exist in my uterus. Let’s just say my nemesis is here to stay. But I’ve made peace with my condition. It’s not the end of life. I still suffer nightmares about waking up with another painful period. It’s harrowing. But it’s not my death knell. I’ve refused to live under the shadow of endometriosis, I can’t let the pain take away my aspirations, my happiness, my future. There is no cure. But there’s management. Clean eating has considerably helped in alleviating the inflammation, thereby lessening the pain. Meditation and yoga has made a lot of difference in perspective and thankfully I haven’t lost my mind yet!
It is estimated that nearly 176 million women worldwide suffer from this disease and it is the leading cause of infertility. Period pain has never before been taken seriously as much as it is now, when people are waking up to the fact that just because it’s meant to be painful doesn’t always mean it is normal. And no, it is definitely not family legacy. Period talk is the need of the hour. Stress is a silent killer and it is known to progressively worsen this condition.
Reading horror accounts of how ruthless this disease has been to many women worldwide, I perpetually fear deterioration in my condition at some point. At the same time I’m amazed at the resilience and forbearance that women’s bodies display at all times. And I’m glad I’m a part of the sisterhood. Someday, I wish my uterus and ovaries have a normal existence and normal functionality. And boy, do I want kids! Lots of them.
P.S. Next time they tell you to ‘suck it up and get to work’, knock them out!
And yes, mefenamic acid and a smiling gynae go a long way!