Silent Struggles: Life with Endometriosis

Many read my previous post, but this one is crucial. My health is better than before. I have come a long way, and I am grateful for all the support and love. But looking back, it feels like the past nine years were equivalent to ninety.

Not just women but many men also connected with me. They wanted me to talk to the women in their families because they, too, are troubled.

Endometriosis and Adenomyosis manifest in different phases. While you can find information about it online, I want to share some unseen phases:

1. In the beginning, intense period pain might prompt you to rely on painkillers just to attend school or college events. Eventually, you’re forced to avoid physical activities, and you choose subjects at school and college that don’t demand physical exertion – in silence.
2. As issues worsen, you may faint during periods. You will feel isolated and mentally troubled while wearing white uniforms, for you cannot afford to get the stains. You will stay silent.
3. Predicting periods becomes a nightmare. Heavy hormonal medications will start, and each month will see you changing clinics due to medication ineffectiveness – which wasn’t required in the first place.
4. Tests will show normal results, leading to medical gaslighting. You’ll be told it’s psychological. You need to gain weight, they will say. Or that you need to lose some. Or worse, to stop thinking that you are bleeding.
5. Despite everything, you’ll look fine externally, but your body will swell. People will comment on your weight. Make fun. You’ll remain quiet.
6. Your evenings, 6 days a week, will be spent in doctors’ waiting rooms, missing social events and family functions. People will eventually even stop inviting you. Texts and calls will cease. It’s funny how you are always unwell, they will say. You’ll be boycotted.
7. Your jeans, bags, and everything will be filled with sanitary pads. People will mock you for carrying them everywhere and call you a supermarket. You’ll remain silent, working in advance due to unpredictable health. Your workplace leaves will not be for vacation but for health reasons. However, on sick leave, you will work from home, surrounded by a hot water bag, medications, and your laptop. People will have a problem with that as well.
8. Despite enduring all this, you will keep working. Because while your body is in pain, you have trained your brain to work and exercise like crazy. It cannot be idle. You will be called a workaholic. You will work 12 hours a day.

In the end, you will be told, “You do the bare minimum”.

For nine years, I’ve struggled with health. Endoverse aims to show that constant bleeding isn’t always just ‘hormonal’ or period-related. It could be internal bleeding, initiating organ damage. Weight fluctuations aren’t solely reliant on exercising. There could be more reasons behind it.

Let’s talk. Converse. Connect.

So no one else suffers in silence.

Endometriosis + Converse = ENDOVERSE

I used to pass out during my periods as a teenager. While people laughed and judged, offering unsolicited advice, little did they grasp the horror of my reality.

Image from my latest surgery in 2023.

Unbeknownst to them, and even to me, I was among the 1 in 10 females silently tormented by endometriosis, its grip intensifying as it reached the devastating stage 4. Adenomyosis, a frozen pelvis, and hemorrhages joined this silent horror, affecting my intestines, bladder, and kidneys. It was an overpowering force, consuming me, while the world remained oblivious to the monstrous hold it had on my life.

I carried on with life’s demands, working through the unrelenting pain. For nine years, I bled incessantly every single day – a steady stream unseen by those around me, as I dedicated myself to work, oblivious to the profound battle silently raging within.

Endometriosis: It is a silent intruder, where tissue akin to the uterine lining grows outside the uterus, causing debilitating pelvic pain and potential fertility struggles. This condition often stealthily begins with a person’s first period and can endure until menopause.

With no known prevention or cure, endometriosis wreaks havoc by triggering chronic inflammation, leading to scar tissue formation, adhesions, and fibrosis in the pelvic region and, occasionally, beyond.

The cause remains elusive, shrouding its unpredictability. However, amidst this shadow, there’s a ray of hope.

While endometriosis and adenomyosis are present in various forms—superficial, cystic, deep-seated, and even occasionally beyond the pelvic realm—the symptoms are where the battle becomes visible. Pain—agonizing and unrelenting—dominates the lower belly, peaking during periods, or basic bodily functions – as basic as walking, working, and surviving.

However, here is the stark reality: some experience this anguish without symptoms, while others endure an array of signs—chronic pelvic pain, abnormal bleeding, fertility challenges, among others—unbeknownst to them as indicators of this condition.

Yet, despite the spectrum of suffering, recognition and diagnosis remain elusive. Even educated individuals, including women, often overlook or misinterpret these signals.

In the span of the last four years, my journey has encompassed multiple major surgeries, numerous medical consultations and procedures, and enduring more than a thousand blood tests. Struggling to walk, stand, or engage in daily activities and enduring abundant medical gaslighting, I continued the hushed battle, pushing myself to work like crazy and live with an unrelenting determination, unaware of the silent strength within, which actually was bolstered by my Maa’s courage and encouragement to keep going, an indomitable force that has always fueled my journey.

This image, capturing my latest surgery a few months ago, isn’t shared to dwell on the hardships but to highlight the strength and perseverance woven into this healing journey.

There is no “cure”, but in awareness in understanding lies our strength. Together, let us shine a light, empowering women across generations to recognize, support, and advocate for those battling silently. In this resilience, there is hope—for a future where endometriosis is seen, understood, and supported.

Today, I extend my hand to collaborate, connect, and collectively generate awareness. Feeling the pain? Let’s connect.

Let’s break the silence. Let’s talk endometriosis. Let’s converse.
Here’s my initiative. Let’s ENDOVERSE.

Stay tuned.