How I've learnt to live with endometriosis, a disease which needs a cure and empathy
It’s late. I am bumping along forest roads on an assignment (my vocation is wildlife conservation and writing) in the company of male colleagues, officials, when the pain strikes — as though I was being repeatedly stabbed by a red hot knife, in my lower stomach, the pelvic, up my thighs, down my lower back. I want to double up, I want to die, I want to howl and cry — but all I do is bite my lower lip, as the jeep hits yet another rock on the kutcha road.
Clutching my stomach, I mumble to my concerned friends that I have a sudden, severe headache — stupid, I know, but how do I expect them to understand the agony of endometriosis, when even my doctors won’t? And chances are that even though it affects an estimated 176 million women around the globe, that’s one in 10 women of reproductive age, they wouldn’t know what endometriosis is.
Even doctors are largely unaware of the extent or severity of the problem, and tend to dismiss it as “period pain”. General practitioners rarely diagnose the disease — the average time between the onset of pain and final diagnosis has been estimated to be more than eight years. It’s a hell of a vexing condition: some women may have no symptoms, for others the condition is crippling. Symptoms differ individually, and the only way to have a confirmed diagnosis is through laparoscopy.
Endometriosis is woefully misunderstood. My frequent visits to the hospital, starting from the time I was a pre-teen (12) were met with a dismissive “girl (and then woman) stuff” or an unsympathetic “she has a low pain threshold” reaction. When The Guardian did an online call-out to women suffering with endo (as it is also referred to) for their stories, many responded that “the doctors thought it was all in my head”. My diagnosis came in 2005; when I was on the wrong side of my 20s, but the disease had been festering for more than a decade, becoming progressively debilitating.
So what is endometriosis? It occurs when the layer of tissue that normally covers the inside of the uterus grows outside. This displaced endometrial tissue bleeds inside your body, but unlike menstrual blood doesn’t go the usual route through the vagina. Trapped, it triggers inflammation and scar tissue, and can cause severe, chronic pain. In other words, tissue grows everywhere it shouldn’t, multiplies insidiously, growing into a bleeding, sticky mess. The cells aren’t fussy, attaching themselves where they bloody well feel like — normally the abdomen, ovaries, bladder, bowel, but at times also the kidneys, legs, lungs, and even the brain.
The causes for endometriosis are unknown — it could be genetic disposition or immune dysfunction. I was distressed, and angry, to learn that pollutants and dioxins in water, air and food are also a factor for the disease wrecking my body. I imagine that living in Delhi, the pollution capital of the world, is not making it any better.
Most of the doctors I consulted had their own pet theories on why this pain was inflicted upon us. It is not retribution because I did not marry or chose not to breed in my early 20s (one common explanation offered).
The pain can be acute, paralysing, agonising beyond belief. Former British Member of Parliament Oona King, who is a fellow-sufferer of endo, writes, “When I was stretchered out of the House of Commons in an ambulance, after collapsing on the floor after six hours of earth-shattering pain, one of the attendants whispered, ‘MPs aren’t allowed to die in the palace.’ I remember thinking although I was a supposedly healthy 32-year-old ‘maybe I am actually dying’."
The pain is unpredictable, hitting anytime, anywhere — at meetings, while walking, or sleeping or doing yoga or having dinner with friends. It became so that I would baulk at planning my work, and life — fearing to go anywhere, plan a holiday or a work trip lest the pain strikes. I have been known to suddenly pull out of pre-scheduled “important” meetings, cancel field trips. One employer mentioned that while I was “the best, but (with a hint of regret) sometimes, so unreliable.”
Not unsurprisingly, the disease has extracted a massive economic burden, partly due to loss of woman days, or because patients have to pull out of the workforce. In the US, with more than 7.5 million women affected, the estimated cost to the economy was $80.4 billion a year. The numbers are comparable to diabetes, but the knowledge or money invested in research doesn’t come anywhere close.
Terribly blinding though the pain can be, it is just one of the afflictions associated with endo. Other related issues are nausea, migraine, nerve pain, pain while crapping, acid reflux, frequent diarrhea/constipation, dehydration, severe back, hip, leg ache. Like most things about endo, there is a haze about the cause. One explanation for lower back pain is nerve damage, inflammation, lesions and/or adhesions that are adjacent to the spinal cord.
Endo is one of the main causes of infertility, and it can take all the joy out of sex. In her book Love, Loss, and What We Ate, model and celebrity chef Padma Lakshmi writes that her struggles with endometriosis played a role in their decision — she was married to writer Salman Rushdie — to go their separate ways. Apparently, when she refused sex due to the pain, Sir Rushdie’s acid response was “how convenient!”
Incidentally, it took 23 years — and bouts of excoriating pain before Padma Lakshmi was diagnosed. Padma Lakshmi has set up the Endometriosis Foundation of America, along with one of its best known specialists, Dr Tamer Seckin.
The disease, unfortunately, has occupied a large part of my life. The pain has become an old friend, I have made my peace with it. Kind of. I work around blinding migraines and a wrecked digestive system. What has me defeated — almost — is the chronic fatigue. Some days are fine, but there are days when even the smallest task saps my energy. A visit to buy vegetables feels akin to scaling Mount Everest.
There is no cure for the disease, it can at best be managed. Hormone therapy, forced menopause, may help ease the pain. It’s like a choice between the devil and the deep blue sea: Would you rather be hit repeatedly with a hot iron or stuff yourself with hormones and suffer depression, anxiety, headaches, hot flushes, nausea, joint stiffness, brittle bones?
The other option is excision surgery, but it’s not like you do it once, and you can be done with it. Most patients become a regular at the surgery table to cut out the unruly tissue. A friend has had eight surgeries, while actor Lena Dunham has gone under the knife every second year of her adult life.
Surgery risks are high, the costs prohibitive. I am yet to find an insurance company in India which covers endometriosis surgeries, as it is classified under gynac — even as it affects others organs of your body, and because it’s “repetitive”, an existing condition. Specialised surgeons are thin on the ground. I also found that most doctors stressed on curing the infertility (which isn’t an issue with me). What I wanted was to be pain-free, symptom-free. I wanted quality of life.
Correct that: I wanted my life back.
In India, awareness about endometriosis is even lower. As a culture, we are prejudiced about gynecological disorders, and if it can cause infertility, it gets more complicated. My doctor was quite astounded that I did not break down when informed I would likely not be able to have kids. But then not to have a child was a call I made early in my adult life.
This isn’t a rant, or a call for sympathy. Dear God, no. In fact, us convent-educated girls still squirm and blush talking about such awkward stuff. Endo doesn’t make for comfortable conversation and it affects those parts and functions of the body that are intimate, and we women have been conditioned to be ashamed of — menstruation, periods, vagina, uterus, sex and the like.
But well, if it means this is a step toward awareness and understanding about the condition, it’s worth it.
I have learnt to live with the disease, found myself a sensitive doctor, worked out a diet which has helped ease the pain. I carry a pharmacy in my purse. I am yet to lose a friend because at times I can be snappy, irritable. Occasionally erupt in a temper. I hate myself for it - for the fact that endo has altered my mental make-up. But it happens, when you are dealing with pain 24x7, and are stuffed with hormones. I have found succour and solutions in online support groups started by some incredible women who have helped many women deal with the pain and psychological scars of the disease. A colleague, Lakshmi Sharath has initiated an online endometriosis support group for India, and I have joined hands. It’s early days yet, but it is a start. I know of many courageous women, super achievers, mothers, homemakers who live with endo, but have overcome it.
What we ask for is change. March is “Endo Month”, and I doubt if the medical fraternity, let alone the government has taken note. Like every year, on the last Saturday of March, which falls on 24th this year, women in more than 50 countries will take to the streets to create awareness and petition governments to ask for more investment in research and better health care for endo. India is not among those countries, but come next year, we plan to be better prepared.
Meanwhile, here is the deal. What we ask for is sensitivity, empathy, and awareness about the disease. One of the worst things about endo is that it’s invisible. People look at you and think you are faking it, as it doesn’t show on the outside. If it helps, imagine how it must feel to have a perpetual severe internal haemorrhage.
We need to increase awareness, even within the medical community. I have struggled for years trying to convince doctors, employers — and yes, at times, friends and family members that the pain is real, not a figment of my imagination. Don’t undermine the trauma, or worse, make me feel like a hypochondriac.
The tide is turning, slowly. The Guardian launched a global investigation into endometriosis, and it has increased awareness, pushed governments to action. National Institute for Health and Care Excellence has issued guidance on managing endometriosis to help better diagnosis for the disease. The Australian government proposes to create the first national action plan for endometriosis, and it’s high time we stepped up in India.
Governments need to invest in funding research and awareness; insurance companies in covering costs, doctors and employers in empathy.
We need more specialists in this field. I want the choice of eating uncontaminated food, breathing clean air. Governments need to stop offering subsidies for pesticides and fertilisers which contaminate, and possibly disable, my body .
Most of all, this silent epidemic needs to come out of the closet: endometriosis is not a stigma, or a lifestyle syndrome, but a disease that needs a cure — and empathy.