"I couldn't lift my own child": three stories of endometriosis in the Maldives

In the Maldives, women with endometriosis – a painful inflammatory condition affecting one in 10 women globally, caused by tissue similar to the uterine lining growing outside the uterus – face diagnosis delays that far exceed the international average of 6.6 years.

Maldivian women with endometriosis face an uphill battle against misdiagnosis, stigma, and financial hardship. Despite the current administration opening an endometriosis clinic and providing health insurance coverage, most surgeries must be done abroad at costs that welfare assistance doesn't cover. Radiologists in the country often lack the training to identify the disease from scans, and patients report having their pain dismissed for years and attributed to “just period cramps.”

A recent letter submitted to parliament by Endo Advocates, a support group with more than 100 members, described the “silent suffering” of patients. The group called for urgent reforms, highlighting limited treatment pathways, poor awareness among healthcare professionals, and the emotional and financial toll on families.

A lack of awareness among both the public and frontline providers normalises and stigmatises pelvic pain and contributes to the long diagnosis delays. The World Health Organisation acknowledges that middle-income countries like the Maldives lack the “multi-disciplinary teams with the wide range of skills and equipment needed for the early diagnosis and effective treatment of endometriosis.”

Many women rely on each other’s experiences through online support networks to find answers and navigate their own care.

In the following accounts, three Maldivian women share deeply personal journeys that span decades of misdiagnosis, financial hardship, and profound loss – but also resilience, advocacy, and hope for change.

It took over 10 years for me to finally get a diagnosis. Endometriosis affected me in every way possible emotionally, mentally, physically, and financially. It’s a condition that impacts every aspect of your life. Some days, you have to plan your entire day around the pain just to get through it.

I would plan my days around my cycle or pain flare days making sure to stay home and avoid any outings or social gatherings like dinners, shopping, trips, or visiting family. During those days, I mostly sat quietly or lay down somewhere, just trying to get through it.

From the very beginning, I experienced heavy bleeding in the first few days and unbearable pain during the first two days of my period. But I didn’t know how to speak about it. I didn’t even understand the difference between normal pain and severe pain, so I stayed silent.

Growing up, periods were such a taboo topic in our society that no one really spoke about them (it still probably is). We were never properly told what was normal and what wasn’t – whether it was heavy bleeding, pain, or symptoms that worsened during menstruation.

In our home, we weren’t used to taking medications, not even for common colds, so I never got any painkillers for my periods. So I just was in mind-numbing pain for every month or often when endo flared up. Pretending to be all smiles and masking the pain. Because period pain is normal. Every woman gets periods. It's no big deal. That's what society says.

After I had my first child, a few months later, I started experiencing constant abdominal pain that was there every single hour of every day. Along with that, I began gaining weight and I was always bloated. At the time, I thought these were just normal post pregnancy changes, and so did everyone around me.

Eventually, I consulted a doctor who advised an ultrasound scan. They found a simple cyst, but the pain kept getting worse. It began to interfere with my daily life in ways I never imagined. I live alone during the day because my husband works, and there were days I couldn’t even lift my one year old child. After giving him a shower or changing him, I just couldn’t lift him up. The pain felt like being stabbed with a knife that never left it was there every single minute.

I lived like that until finally, a radiologist advised me to go abroad to remove what turned out to be an endometrioma, which had grown to 8cm.

During surgery, the doctor actually came out of the operating theatre to speak to my husband. He explained that my bowels, ureter, uterus, and ovaries were all stuck together with severe adhesions and endometriosis nodules. They needed more time in theatre to carefully separate and free the organs, and my husband had to sign additional consent forms.

That was how I was finally diagnosed with endometriosis after 10 long years of pain and suffering.

I was diagnosed with endometriosis in 2012, but no one ever explained to me what it actually was. The word “endometriosis” was just written in my surgery card. After the surgery, the doctor went on leave, and I was left without any answers. I honestly thought that once the surgery was done, I was cured that the problem was gone and I would be fine for the rest of my life.

I did get relief for somewhat six to seven years per se. Symptoms were alleviated. But I had three pregnancies at the time. And some pregnancies are known to alleviate symptoms of endometriosis. Thus the myth and saying “Pregnancy cures endometriosis” but it of course doesn’t

They found another cyst, and it grew to 5 cm. Dr Cristina advised me to consult Dr Varsha for a cystectomy (laparoscopic removal of the cyst) because if Dr Cristina were to do it, she would have to perform an open surgery, and I wasn’t comfortable with that option. Both are Treetop Hospital doctors.

At this time, I was in constant pain again. I had used Dhivehi beys (traditional Maldivian medicine) from a local island for my postpartum recovery, but my endometriosis symptoms kept getting worse, and I was in pain every single day.

The doctor advised me to take a Depo Provera injection, which is a three-month dose. I was very hesitant because I am extremely sensitive to synthetic hormonal medications and often experience severe side effects, so I am always cautious. But the doctor persuaded me to take it. After taking just one injection, my symptoms worsened within the month, and my mental health took an even darker turn.

When the doctor recommended I take the Depo injection my mental health suffered so much that it got to the point I was suicidal. I didn't go through all the dosages but there are people who have done it despite the effects because that's what the doctor tells them to do. 

So I refused it, and then I got a cysectomy. After a month I collapsed from terrible pain. But that was after I did the surgery which I had spent MVR 15,000 (US$ 970) on at Treetop. And then I collapsed and I had to go and get scans again, each costing MVR 500. And we found that there was a cyst in both ovaries again. 

It is so painful and so many people suffer in pain, because we are expected to function normally. For fear of losing our jobs as well. We have to go to ER and then go right back to work. This is the level that it affects daily life. 

Finally, I started doing my own research and I found a doctor from Mumbai. I did an online consultation and sent all the scans. The doctor recognised the endometriosis nodules and showed it to me on shared screen. He explained how the surgery I had done was an unnecessary surgery and I needed to do another one surgery, which would cost me like a US$ 1,000.

He explained everything to me and I finally understood the things that was affecting me.  He also prescribed me painkillers. It made me sleepy and numb and hard for me to do domestic work. I also got pregnant again but the pregnancy was not like before. It was much more difficult. I had to get an emergency c-section and take the baby out prematurely. And then after three months, the pain started again. But now I understood why it was happening. When it got bad again, we found that I was having ureter issues and my kidney was swollen so I couldn't delay treatment any longer. 

But that was the time around which the [President Dr Mohamed] Muizzu administration began. It is then that they started acknowledging endometriosis even if they maybe are not very well informed. So now Aasandha is offered for endometriosis treatment and NSPA [National Social Protection Agency] assistance is available. I did my surgery last year and I can say I have not been to the ER since. I have started having pain-free periods for the first time in my life. Quality of life is completely different now a difference of night and day.

It's also important to note that endometriosis is different for everyone. Some people experience pain during sex but others do not. Some are even scared to get married or have marriage problems because of this. 

I think the fact that this is a taboo topic is the reason it is so hard to diagnose. I  am sure my mother and grandmother's generation must have suffered the same, even after menopause. But they won't know what they don't know. That is why they can say having painful periods is normal. 

Endo support group now is a space where members share information, list of doctors, treatment options and general information and support by listening to each other. We urge everyone to do their own research and explore what is best for them.

I am 34 years old. I was first diagnosed with PCOS/PCOD at the age of 22, and later with hypothyroidism and hormonal imbalances at 25. Thankfully, the thyroid and hormone issues resolved within a year.

Even though my test results showed everything was normal, I continued to have several symptoms: constant pain before periods, heavy bleeding, and sleep issues. I had my first baby at the age of 26 and became very busy with life, so I didn’t get much time to go for check-ups. I also had a small fibroid outside the uterus, and although I was supposed to do scans and hormone tests regularly, I only managed once or twice a year.

At age 31, the pain worsened. Period pains began two weeks before my cycle, leaving me dizzy, faint, nauseous, and sometimes vomiting. My periods had become regular, but the pain was severe, and I never felt normal even after my cycle ended. In a typical month, I only felt pain-free for about five days right after my period – then the cycle would start again.

When I finally went for my routine pelvic scan – which was overdue, since I was supposed to check every six months – I was diagnosed with endometriosis at the age of 33.

I’m someone who doesn’t take much medication, as I believe lifestyle changes can make a real difference. For me, taking medication gives another sickness like bloating, gastritis and more stomach issues. So I continued going to the gym regularly, running, practicing intermittent fasting, and making other lifestyle adjustments. You need to believe you have this and you need to treat it by yourself by being consistent and keep doing it. 

I didn’t get it checked again after that, because five months later I became pregnant.

My personal journey with endometriosis has been one of silent suffering, misdiagnosis and making every day feel like an unpredictable challenge of immense pain. A battle that lasted for decades before I finally had the answers I had been searching for. Alhamdulillah ‘ala kulli haal.

I started having symptoms when I was 13 years old and got a proper diagnosis after 26 years of not knowing what was happening to me. I was told it was just normal cramps. That I was overreacting. That every woman experiences pain. But this wasn’t just pain. It was agony that stole my days and nights. Pain that left me curled up on the floor unable to move. Pain that no medication could touch. Doctors dismissed it. I began to question if I was losing my mind.

All those years trapped in a cycle of endless appointments, invasive tests and failed treatments. I saw doctor after doctor. Scan after scan showed nothing. Medications did nothing. I was sent home and told to manage it when managing it meant losing pieces of my life. It meant missing out on moments I could never get back. Cancelling plans. Carrying the pain quietly.

Even after receiving my diagnosis relief didn’t come right away. It took four more years of endurance and continuous suffering to finally experience some sense of improvement. The real turning point came with the surgery, one that brought not a permanent cure but a measure of relief that felt like a breath after nearly drowning for years.

Endometriosis is not just a bad period. It is a disease that spreads into every part of your life. It attacks not just the reproductive system but the nerves, the organs, the very ability to function. It causes debilitating pain. Crushing fatigue. Inflammation that spreads uncontrollably. Complications that steal more than just physical health. It takes your sense of self. Your peace of mind. Your hope. And yet it remains widely misunderstood. Under-researched. Dismissed by so many in the medical field.

After decades of fighting for answers and receiving the diagnosis that changed everything, the damage had already been done. By the time I found the right doctor. By the time I underwent the surgery that was meant to free me. It was too late to undo the cost of all those years. The relief came. But not without a price. But Alhamdulillah for everything happens with the perfect wisdom and decree of Allah.

My surgery was done abroad by an excision specialist and this was the turning point. It was then I learned I had both endometriosis and severe adenomyosis. My uterus had been overtaken by a mass from the adenomyosis, the source of years of unbearable pain and heavy bleeding. The damage was so severe that removal of the uterus became the only option. Along with the uterus my fallopian tubes were removed but my ovaries were preserved.

Endometriosis was found on both uterosacral ligaments which were fully excised and my appendix was also removed. Alhamdulillah my bowel was unaffected though the nearby endometriosis could’ve caused digestive issues.

It was through this surgery that I was also diagnosed with interstitial cystitis, a chronic bladder disorder often considered the twin of endometriosis. In my case it was confirmed through biopsy.

Doctors refer to adenomyosis as the evil cousin of endometriosis and when they coexist the impact is severe. These conditions are aggressive, invasive and together they don’t just disrupt life they consume it. The physical toll, the emotional weight, they tear through a woman’s body and life in ways that words can barely capture.

The surgery that changed everything was a chapter that brought with it both relief and heartbreak. A surgery that left an emptiness in my soul that no words can ever fill. It stole a precious part of me I can never get back. One that brought unbearable pain, haunting memories and a grief so deep that only Allah knows its weight. It left me empty, shattered, marked by a loss so deep that no words, no comfort, no passage of time can ever heal.

I lost my sons. With them a part of me was buried too. I have carried this grief in silence hiding the pain behind forced smiles and whispered duas. I have endured nights where the weight of their absence crushed me where my heart ached for them in ways I never knew was possible.

My pregnancies were fragile from the start, each one shadowed by the threat of early contractions and complications. Frequent hospital visits became part of my routine. Losing my first baby, everything changed in a moment. At just 29 weeks I was struck with sudden pain and rushed into delivery.

My baby was born prematurely and immediately placed in the ICU. He fought bravely for four days but on the fifth day his tiny body could no longer bear the struggle. His lungs and brain were not fully developed. The doctors tried everything, machines to help his lungs, every possible support but then came the blow that shattered my heart. His lungs began to leak.

And what broke me even more was learning that the hospital had run out of the injection that could have helped develop his lungs. It had been used for another premature baby and the parents hadn’t replaced it as expected. Because of that delay my baby didn’t receive the injection in time. And I lost him.

My last baby was diagnosed with a neurological disorder. He was born without a brain and skull, a truth I could only face when I was already four months pregnant. By then there was no choice but to carry the pregnancy no matter how unbearable it was. It was one of the most heartbreaking times of my life.

He was born at just seven months and I held him in my arms for only three hours before he passed away. To this day I don’t know the cause of my babies losses. Whether it was endometriosis, adenomyosis or the cruel mix of all my conditions together. No doctor could give me the answers I desperately sought. The uncertainty still haunts me but the pain of losing them is something I carry with me every single day.

The memories of that hospital room still haunts me. The moment I realized life would never be the same. The pain that wasn’t just physical but emotional. The loss that words will never do justice to. The months that followed were filled with grief. Flashbacks that wouldn’t fade. The quiet ache of knowing that some things could never be restored.

The past years have been filled with flashbacks that won’t fade. Reminders of what was and what will never be. It is a pain that no human words can comfort. This surgery stripped me of the very thing that made me feel alive. The memories replay endlessly. The hospital rooms. The pain. The moment I knew I was losing them. The moment I saw their lifeless bodies knowing I would never hear their laughter, never see them grow.

The moment I walked away from their graves leaving a part of myself buried with them. But Alhamdulillah ‘alaa kulli haal. Even in my darkest moments I remind myself that my children are not lost. They are waiting for me in Jannah, safe and protected in the mercy of Ar Rahman.

In the depths of my suffering I found something greater than pain. I found the mercy of Allah. Through every tear. Every night I lay awake when I felt overwhelmed and alone, Surah Ar-Rahman would echo in my heart reminding me of Allah’s boundless mercy. The verse that says, “Which of the favours of your Lord will you deny?” resonated deeply within me. It was as if Allah was gently reminding my soul that despite my suffering His blessings were abundant and I was never truly abandoned. Even in my darkest moments His mercy was always near and His promises of relief were the light guiding me through the storm.

I can’t help but remember that the surgery that freed me also took away my most beloved organ, the one I had prayed to Allah to take with me to the grave. But Allah tests us with what we hold most dear, and for that, I’m grateful to my Rabb in every circumstance. This journey which stripped away so much brought me closer to Allah in ways nothing else could. Through it all He never left me. When I had no one He held me. When I had no strength, He reminded me of the power of la hawla wa la quwwata illa billah.

Wallahi I was someone who created my own happiness. But in these past years I have never felt more alone. I failed many days struggling to find the strength to go on. Yet each time I fell it was my duas and my whispered cries to my Rabb that pulled me back up.

And now my story does not end with me. At just 16 years old, my daughter has also been diagnosed with endometriosis. It gives me painful flashbacks of all those years of torment – to see her struggling with the same illness I have is heartbreaking.

It is known that endometriosis can run in families, and doctors now recognise a strong genetic link. Yet in teenagers, it is still so often dismissed. Research shows that nearly 60 percent of women with endometriosis began experiencing symptoms before the age of 20.

My message to parents with teen girls: please pay close attention to unusual symptoms early on. Early diagnosis could make a world of difference in managing this disease. This illness doesn’t just affect one generation – it can affect families. Raising awareness, especially for our daughters, could save them from years of silent suffering.

I do not share this for sympathy. Nor to dwell on the pain. But to shed light on a disease that is too often ignored. To give a voice to those who are suffering in silence. If you are battling this. If you feel unheard. If you are drowning in pain that no one seems to understand. Know that you are not alone. Keep fighting for answers. Keep advocating for yourself. Your pain is real. And you deserve to be heard.

Today I stand with the strength and patience that Allah has granted me. My journey is one of loss but also of hope. My children were never truly mine to keep they were a trust from Allah and now they have returned to Him. And though I will never hold them in this dunya again, I live with the unshaken certainty that one day in Jannah I will.

What more could I ask for?

Words will never do justice to the depth of this pain, to the years of silent suffering and to the aching reality of what I have endured. But as I reflect on the path that brought me here I pour out my heart not for pity but simply to acknowledge the journey that has shaped me.

To everyone who has supported me through your prayers, You may never fully understand what this road has been like for me but your presence and your kindness have meant more than you know.

I'm truly grateful for my best friend who held my heart with the gentlest hands and earned a place in my life that words can never fully honour. Alhamdulillah, throughout my journey, she made my pain and hurt more bearable with her presence. In my darkest moments, she stood by my side refusing to leave offering me comfort and solace.

Alhamdulillah for everything. Even the pain. Even the heartbreak. Even the loss. The struggle. The lessons. And the certainty that even in the hardest of tests Allah’s mercy is always near.

In sharing this I hope to offer a glimpse into a journey that has shaped every part of who I am. A journey marked by hardship, loss, healing and an unwavering connection to the mercy of Allah. Through it all He has been the Most Generous with His mercy. Alhamdulillah.