August 10th, 2023. One month ago. I sat in the hospital bed, shivering, despite the number of blankets the nurses brought for me (it’s VERY cold in hospitals). I felt incredibly nervous – something expected before any surgery. What would I feel when I woke up? How much pain would I be in? 

Even worse, what was lurking inside, and how would we go about fixing it? 

Though that laparoscopic surgery was undoubtedly scary, it finally gave me the answer. It validated the pain and symptoms I had been experiencing all these years. I have endometriosis, a disease in which a tissue similar to the lining of the uterus grows outside the uterus. In a woman’s menstrual cycle, the lining of the uterus (called the endometrium) sheds; however, when this endometrium-like tissue grows elsewhere, it cannot shed. 

This causes debilitating pelvic pain, fatigue and a variety of other symptoms, which not only occur during the menstrual cycle days, but also on other days of the month, as well. This “endometrium-like tissue” (which I will refer to as endo from here on out) is capable of spreading to pretty much… anywhere. It can go to the ovaries, kidneys, the colon (which could lead to parts of the colon being resected), and even the lungs. 

Personally, I always had rough cycles. When I was younger, the pain was extreme; yet, I always believed it was normal, and that the level of cramping varied among people. Besides, explaining pain was difficult; I’m the only one experiencing it, so how would anyone else understand? 

My symptoms crossed the boundary of being “normal” during high school. Suddenly, I would get very bloated, and even visibly distended: my belly would expand like a balloon, creating extreme discomfort as it pushed against other areas. Pain radiated everywhere, and the cramps and heavy bleeding continued to persist. Due to this bloating, I couldn’t eat or drink much during my cycle days; doing so only made me nauseous. 

Each cycle seemed to wreak more havoc. I found myself hoping that my cycle would come over the weekend, so that I wouldn’t have to miss school (though it didn’t always work out that way)! 

My period was predictable, but my symptoms were the opposite; for those few days every month, I could barely do anything. For me, this feeling was the worst part of it all. And, recovering from this monstrous cycle only to have it come back four weeks later was a challenge as well. 

When I was younger, I had seen an adolescent doctor for my heavy bleeding and extreme pain. I passed huge clots, and was taking iron supplements; this led the doctors to rule out Von Willebrand Disease (VWD), a blood disorder in which the blood does not clot properly. They told me to take more ibuprofen, or stronger pain medications like naproxen. As my grandmother also experienced heavy bleeding, the doctors told me I was “normal.” And, if I really couldn’t handle my period, I could take birth control (which I never ended up doing). Everyone gets their period, and I was no different.  

As my symptoms continuously progressed, my mom and I ended up seeing another children’s gynecologist in March 2023. By this point, after researching a lot, we suspected I had endometriosis. Yet, this doctor again suggested birth control, telling me that my pain was “normal.” (though she could not explain the reason for my bloating). I was unsatisfied with this; birth control felt like putting a band-aid on a problem. I knew there was something causing my symptoms. 

Then, International Women’s Day on March 8th, 2023 rolled around, and we saw this article profiling celebrity conservationist Bindi Irwin. She chronicled her ten year struggle with endometriosis, and how she had laparoscopic excision surgery to remove it. Irwin’s surgery was performed by Dr. Tamer Seckin and Dr. Amanda Chu at Seckin Endometriosis Center, located in New York City (which is not too far from NJ)! Dr. Seckin is a world-renowned endometriosis specialist who also co-founded the Endometriosis Foundation of America alongside chef and television host Padma Lakshmi (who suffered from the disease). 

I saw Dr. Seckin for the first time in May 2023. He listened to my symptoms, and explained that my bloating was often seen in endometriosis cases. Sometimes, these symptoms could start exclusively during cycle days and later spread to non-cycle days. I walked out of Dr. Seckin’s office feeling hopeful; I knew I was in the right place. 

Unfortunately, endometriosis could only be truly detected and removed through a laparoscopic procedure. After getting an MRI which confirmed that there were signs indicative of endometriosis, I was scheduled for laparoscopic surgery a few months later in August. 

It turned out that there was more endo than we expected, considering that I’m only 17. During the laparoscopic excision, Dr. Seckin and Dr. Chu removed forty-two lesions, some of which had already started to progress into adhesions. These structures bind to inner parts of the body such as the pelvic cavity, the peritoneum (the lining of the abdomen) and the inner wall of the uterus, and “pull” structures together. Eventually, adhesions result in hard, fibrous scar tissue, spread further throughout the pelvis and result in fusion, where organs are covered in this tissue and are fused, or “stuck” together – which is a very scary situation to be in. This article from Dr. Seckin’s office explains the progression of endometriosis in great detail; it was a very insightful read! 

My endometriosis had progressed into adenomyosis, where the adhesions lodge themselves into the muscle of the uterus. While the inflammation, lesions and adhesions were mostly concentrated in the pelvic cavity and the peritoneum, it had also begun to spread to other places such as the ureters (the ducts that carry urine from the kidneys to the bladder) and the rectum. 

I feel extremely lucky to have caught my endometriosis in time. If we had waited a few more years before doing surgery, it could have progressed into something much worse. I only grasped the full reality of this after my postoperative visit at Seckin Endometriosis Center, where Dr. Chu showed images from my surgery. It’s one thing hearing about the endo sprinkled throughout the pelvic cavity; seeing them was a completely different story. While the macroscopic disease was removed, it still exists at the microscopic level. 

I know I’m in the right hands. Dr. Seckin, Dr. Chu and their surgical team are not only incredibly experienced, but also very kind and understanding, and this brings me immense hope – not only for my future with the disease, but also for the girls and women who are suffering from the same problem. 

As for now, I’m recovering nicely from surgery. The past few weeks involved getting back into the swing of things, especially when it comes to writing (a passion that my endo symptoms often put on hold). 

Yet, many unknowns lie ahead. Endometriosis is a chronic condition without a cure; as  long as I continue ovulating and getting my period, it will come back. Estrogen, produced by the ovaries, fuels the disease. To minimize my period and slow progression of the disease, I’ve been taking progestin –  a man made, synthetic form of progesterone – to counter the effects of estrogen. Being on this hormone has been an adjustment, and I quite honestly don’t know what will happen in terms of my period and side effects. 

This is a gray area for everyone. As much as I keep on reading, I can’t seem to find what happens after being on the hormone. I’ll likely need to have repeat surgery in a couple of years to assess the effectiveness of my current treatment protocol, as well as remove any endo that may have come back. The unknowns are overwhelming; yet, I’m trying to take it one step at a time. 

What surprises me is the lack of overall awareness and funding for endometriosis research, even though the disease affects one in ten women of reproductive age. Part of this definitely has to do with the taboo centering around menstruation. Periods are not just something that everyone gets; there are problems associated with it, like endometriosis. It’s mind-boggling how something that’s supposed to be natural can hurt me. In order for women to get the help they need, we as a society need to be understanding of menstruation and have conversations regarding it. 

I think the best way to do this is through stories. After reading plenty of endometriosis stories online, I now feel that I’m not alone. Initially, I wasn’t sure if I should make this post; yet, my endo journey is integral to my story, to my kahani. And, this is an important topic that needs to be discussed more. 
I’m an ordinary high school student who’s figuring life out. I don’t know what the future holds, but I do feel… hope – and that’s what keeps me going.