Endometriosis: A disease which needs cure and empathy. Not ignorance and callousness
It’s late. I am bumping along forest roads on an assignment (my vocation is wildlife conservation and writer) in the company of male colleagues, officials, when the pain strikes — as though I am 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? Fact is, though it affects an estimated 176 million women around the globe — that’s one in 10 women — the public at large wouldn’t know what endometriosis is.
Even doctors are notoriously 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 the final diagnosis has been estimated to be over eight years. Endo (as it is also referred to) is 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 invasive 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’. When The Guardian did an online call-out to women suffering from endo for their stories, many responded with “The doctors thought it was all in my head”. My diagnosis came in 2005; when I was in the wrong side of the 20s, but the disease had been festering for over a decade and 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 like hell, growing into a bleeding, sticky mess. The cells aren’t fussy, attaching themselves where they bloody well feel like-normally 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 am distressed, and angry, to learn that pollutants and dioxins in water, air and food are also factors 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 we were inflicted with this pain. The most common one I have suffered is that it is retribution for not marrying or breeding in my early 20s. It’s the cost of being a (selfish) career women. ‘Advice’ I hear (or used to, I guess I am past the ‘sell-by’ date now!) all the time: “Why don’t you get married and have a child?”
This opens another can of worms, but I am leaving it for another time.
The pain can be acute, paralysing, agonising beyond belief. Former British Member of Parliament Oona King who is a fellow-sufferer from 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: In meetings, while on a stroll, shopping, sleeping, doing yoga or having dinner with friends. It has become so that I baulk at planning my work, and life — fearing to go anywhere, plan a holiday or a work trip lest the pain strikes, and I am ‘downed’. I have been known to suddenly pull out of pre-scheduled ‘important’ work meetings, cancel field trips, or much-awaited events or get-togethers with friends.
It does not go well with regular employment. One employer remarked that while I was “the best of the employees, but (with a hint of regret) unpredictably 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 work-force. In the US, with over 7.5 million women affected, the estimated cost to the economy was $80.4bn a year. The numbers are comparable to diabetes, but the knowledge or money invested in research, doesn’t come anywhere close.
Terribly blinding through the pain can be, it is just one of the afflictions associated with endo. Other related issues are nausea, migraines, nerve pain, pain while crapping and peeing, acid reflux, frequent diarrhoea/constipation, dehydration, severe back, hip, leg aches.
Like most things about endo, there is a haze about the cause of these affiliated conditions. For example, 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 excruciating 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
It is horrifying that I, and millions of other women, must struggle with something so debilitating, and an indifferent medical profession, and society. It is disquieting not to know when you will be cleaved by the tormenter. It is like walking on eggshells, perpetually in the apprehension of the anticipated tearing up of your insides.
The disease 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 the agonising cramps, blinding migraines and a wrecked digestive system. What has me defeated almost is chronic fatigue. Some days are ok, but in others, even the smallest task totally saps my energy. I wake up, longing to crawl back into the blessed bed. Getting up seems an insurmountable task, and a visit to buy vegetables from the nearby grocery 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 be done with it. Most patients become regular at the surgery table to cut out the unruly tissue. A friend has had eight surgeries, while actor Lena Denham has gone under a 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 gynecology, 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 stress on curing infertility. What I want is to be pain-free, symptom-free. I want a quality of life.
Correct that: I want my life back.
In India, awareness about endometriosis is even lower. As a culture, we are prejudiced about gynaecological disorders, and if it can cause infertility, it gets more complicated. My doctor was astounded that I did not suffer a breakdown when informed I would likely not be able to have kids. But then not to have children 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, many convent-educated girls like me 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 private, intimate, and we women have been conditioned to be ashamed of — menstruation, periods, vagina, uterus, sex…you get the drift?
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 have found scour, and solutions, in online support groups started by some incredible women who have helped many women deal with the pain and psychological scars of this 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. We now have over 40 members in the group. I know of many courageous women, super achievers, mothers, home-makers 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 through March, women in over 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. For the first time, India is marching too on March 31st in Hyderabad.
What we ask for is sensitivity, empathy, awareness of the disease. One of the worst things about endo is that it’s invisible. People look at you, seemingly normal and fine, and think you are faking it. The crippling agony underneath isn’t visible to the eye. And most of us are conditioned to put on a ‘good face’. Everyone says they are fine. But to help you gauge the pain, imagine how it must feel it be to have a perpetual severe internal haemorrhage. Or be stabbed internally, repeatedly, with a cleaver.
We need to increase awareness, even within the medical community.
I have struggled for years trying to convince doctors, employers and even friends and family members that the pain is real, not a fragment 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. In the US, National Institute for Health and Care Excellence (Nice) has issued guidance on managing endometriosis to help better diagnosis for the disease, while the Australian government proposes to create the first national action plan for endometriosis.
I am a student at Cambridge University currently, and I am astounded and touched by the empathy I have received, including from the Disability Resource Centre. It is such a relief to have your pain legitimised.
We need to step up in India. Governments need to invest in funding research and awareness; insurance companies in covering costs, doctors and employers in their empathy. We need more specialists in this field. I want the choice of eating uncontaminated food, breathing clean air. Governments need to stop subsiding pesticides and fertilisers which contaminate, and possibly disable, my body. And scores of others.
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.
Also read: If our pain isn't seen, where do we go?