‘Padma Lakshmi was diagnosed with endometriosis after 23 years. I too waited a decade’

Author: Prerna Singh BindraIt’s late. I am bumping along forest roads on an assignment in the company of male colleagues and 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. Through a haze of pain, I mumble to my concerned colleagues 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 in reproductive age, they wouldn’t know what endometriosis is.
That was over nearly two decades ago, but the shocking lack of awareness about endometriosis — and my pain — persists. General practitioners rarely diagnose the disease — average time between onset of pain and final diagnosis is 8.5 years as per some studies, and even specialists are ill-informed.

My frequent visits to the hospital, starting from the time I was 12, were met with a dismissive ‘girl (and then woman) stuff’ or an unsympathetic ‘she has a low pain threshold’. My diagnosis came in 2005, when I was on the wrong side of 20s, by which time the disease became progressively debilitating.

Endometriosis occurs when the layer of tissue that normally covers the inside of the uterus grows outside. This displaced endometrial tissue bleeds inside the 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 that hits anytime, anywhere. 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 (as I did).

The causes for endometriosis are unknown — it could be genetic disposition or immune dysfunction. Pollutants and dioxins in water, air and food are also a factor. I imagine that living in Delhi NCR — one of the most polluted cities globally — is not helping any.

Doctors I consulted had their own pet theory on the cause — one that fellow endo sisters have heard as well — my single status. ‘Advice’ included: Get married and have children. This opens another can of worms, but I am leaving it for another time.

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 she and writer Salman Rushdie going 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. She has set up the Endometriosis Foundation of America along with a specialist.

There is no cure. Endometriosis 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 rarely does one surgery do the trick. Risks are high, the costs prohibitive. I also found that most doctors are geared toward managing infertility, not so much the endo itself. My doctor was astounded that I did not suffer a breakdown, when informed I would likely not be able to have kids.
What I want is to be pain-free, symptom-free. I want quality of life. Correct that: I want my life back. 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’ve found succor and solutions in online support groups started by some incredible women who have helped many deal with the pain and psychological scars.

We are not looking for sympathy, but for change. Govts need to invest in funding research and awareness; insurance firms in covering costs; and doctors and employers in their empathy. We need more specialists in this field. I want the choice of eating uncontaminated food, breathing clean air. Govts need to stop subsidising 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.

Bindra is an environmentalist and PhD scholar at Cambridge