When it comes to matters of the womb, women have often had to smile through silent agony. Excruciating period pain has been something to just be endured. Perhaps the stigmatisation of even uttering the word ‘menstruation’ has contributed to endometriosis being an invisible illness. But this chronic condition, which creates an inflammatory response, scarring and pain, impacts one in 10 women across the globe—a debilitating disease that can wreak havoc over all aspects of a woman’s life and which has been linked to infertility.
As Alexa Chung aptly put it, it’s a club you didn’t sign up for, but just like her, I’ve found myself with lifelong membership. Unbeknownst to me, I had been part of this community for over 20 years, only for it to officially come to my attention once I started trying to become a mother. Even though women can present the illness when they are still pubescent, unfortunately some of us don’t catch it early—we only find out when we struggle to conceive. According to the physician who operated on me, Dr Law Wei Seng, obstetrician, gynaecologist and gynae-laparoscopist with special interest in fertiloscopy at Mount Elizabeth Novena Hospital, a delay in detection could be because “there is a common perception that a period needs to be painful. A lot of women do have the symptoms but they just pop painkillers or anti-inflammatory drugs until they start planning for children. They try but do not get pregnant after months or even years, so that’s when they realise something is wrong.”
Even though women can present the illness when they are still pubescent, unfortunately some of us don’t catch it early—we only find out when we struggle to conceive.
The endometriosis experience: more than “just cramps”
My first episode of ‘endo’ began not long after my first period at around 13 years old. A baptism of fire one could say. I found myself doubled over in distress, slipping in and out of consciousness, bloated, pale and feverish from the cramping. Cyclically, month on month thereafter I would throw up, sometimes pass out, have digestive issues, an inflamed pelvis and more. Even though I vocalised my pain, instead of being diagnosed, I was repeatedly dismissed. I explained my protracted symptoms to general practitioners over the years and the conclusion was that I had primary dysmenorrhoea (an even harder word to pronounce than endometriosis) that just meant ‘a painful period’. The denial issue was also compounded by the fact that I didn’t look sick. But as Dr Suresh Nair, obstetrician and gynaecologist with a subspecialisation in fertility, in vitro fertilisation, laparoscopic and robotic surgery at Mount Elizabeth Novena Hospital, describes, this can minimise the female experience.
“She has to put up a facade, but she is crying in pain internally and she can’t show it. That is the situation women are finding themselves in now. They have to turn up for work, they have to turn up to study, they have to turn up for their families and function. It affects every aspect of a woman’s life from when she wakes up, her sexual function, her bowel function, her urinary function. These are things that we take for granted.”
For Neha Puri, 33, make-up artist, founder and creative head of artisan jutti brand Threadwheel, finding out about her endometriosis was a bittersweet moment. “I always felt that my pain was more than my friends’ and my sister’s. But I was told that this was just periods. I felt like nobody was listening to me. No one was addressing the fact that I’m not feeling right about this pain.” With a prognosis came validation. “It was a sense of relief in confirming that I knew it was never normal.”
Mystery uncovered: an often misdiagnosed disease
According to Law: “Endometriosis is the growth of the womb lining outside the womb.” A retrograde menstruation if you will. “Every month, the endometrial lining sheds, which becomes the period. However, some of the tissue flows back through the tubes to the pelvis and becomes trapped or grows in these places and even on the ovaries themselves, forming endometriotic cysts.”
Even though it is one of the most common gynecological diseases, it can often be misdiagnosed or even missed completely as the adhesions can evade detection on scans or ultrasounds. Depending on the patient, a more invasive course of action, such as a laparoscopic surgery, takes place to determine and treat the source of the pain. In this diagnostic procedure, tubular instruments including a high-resolution camera are inserted into the abdomen. If endometriosis is present, it can be excised from the body then and there—an operation that helped greatly in alleviating my symptoms. Despite these medical advances, this elusive condition has long been misunderstood as each case is different. “Surgery for endometriosis is even more difficult than for cancer,” explains Nair. “Endometriosis has been described as an enigma because you can do a scope and find a little smattering of disease, but the patient is crippled with pain. Then there are women who have stages three and four—fairly extensive—and they’re not in pain.”
Then there is the lack of discourse on the subject. Puri was unaware of it until it was confirmed she had stage four. “When I got diagnosed, it was the first time I heard the word, endometriosis. But what was shocking was that when I told people about my condition, apart from my sister, there was not one single person who knew what I was talking about. It hit me that I have so many female friends and colleagues and nobody knows about this.”
Protect the female: more awareness, understanding and empathy
There is no cure for endometriosis. Hormone therapy like the contraceptive pill, pain medication, diet changes and holistic approaches could potentially help quieten symptoms. But perhaps if there were more awareness, more understanding and empathy, it would be faster to diagnose, be treated, be managed and in general, be easier to cope. Perhaps we would no longer have to suffer in silence. “You have to know your partner and what your partner is going through. And if you are one of the myriad people around her saying it’s all in her head or it’s just that time of the month, then that relationship will break down, regardless of what symptoms she may have,” says Nair. “We also need to convey this knowledge to men because they are the other half of humanity that is in close, constant deep interaction with women who suffer from this. Yes, it is a female problem, but it is their problem too. The woman is the bastion of the well-being and health of the whole family. She is the nucleus. Society must accept and come to terms with the fact that we need to protect the female. You protect the female, you also protect the man, the family, the whole nation.”