Culture / What Pisses Me Off: Why My Endometriosis Was Ignored For Years

What Pisses Me Off: Why My Endometriosis Was Ignored For Years

Culture Jan 18, 2023

by Jessica R. Gera

You know what really pisses me off? Endometriosis. You know what pisses me off even more? The fact that going into 2023, people still don’t know what it is. Take a moment and ask yourself, have you ever heard of Diabetes? Breast cancer? How about Schizophrenia? While these conditions certainly deserve the awareness they have, I would like to ask you, have you ever heard of endometriosis? That’s my point.

I write this article with two simple intents. First, if you suffer from endometriosis and were left to feel that you have lost your faculties, and the pain really isn’t ‘that bad,’ then I’m here to tell you, your faculties are just fine. You are not crazy. You are very sane. Second, if this article educates even a handful of people on this life-altering disease, I will be grateful. It’s a step in the right direction.

Endometriosis, pronounced ‘en-doe-me-tree-oh-sis’ is an extremely painful disorder where tissue that should stay within a woman’s uterus, makes its way outside of the uterus, and often finds its way into a woman’s ovaries, fallopian tubes and even into the tissue that lines the pelvis. It is NOT normal period pain. It’s debilitating, beyond painful, can cause a number of bowel issues, chronic inflammation, and is one of the main culprits contributing to infertility. In fact, up to 30% to 50% of women with endometriosis may experience infertility. How do I know? Because I, myself, live in this condition regularly.

In Canada alone, approximately 500,000 girls and women are affected by endometriosis. While that is startling enough, it doesn’t help that the diagnosis of this unforgiving condition is often delayed by five years (sometimes more), due to lack of knowledge and funding.

In fact, organizations like the National Institute of Health (NIH) have contributed 0.038% out of the entire 2022 health budget toward endometriosis. Yes, 0.038% for a condition that is wreaking havoc on 6.5 million women in the United States and over 190 million worldwide.

Further research shows us that 42 million women in India have endometriosis and South Asian women, in particular, have higher rates of endometriosis than their white counterparts. Why? I wish I could tell you that. Just another reason why we desperately need funding to understand this disease, and the cruel decisions it makes.

While I can’t sugar coat the impact of endometriosis, it makes me happy, and proud to see South Asian leaders do their part in combatting this disease. Padma Lakshmi, Top Chef host, is an Indian-born, Tamil/American author, activist, actress, model, and philanthropist.

**What Pisses Me Off: Why My Endometriosis Was Ignored For Years: Padma Lakshmi.** Photo Credit: www.yahoo.com

Lakshmi, like many of us, suffered from endometriosis her whole life, only to be officially diagnosed at 36 years of age; decades after getting her first menstrual cycle. It literally hurt my heart to learn of her late diagnosis. I can relate. I have suffered from endometriosis for over four decades now. When I initially reached out for help, like many, I was told I just had “bad periods,” “it can’t be that bad, it’s in your head,” and my personal favourite, “you need to go on anti-depressant medication.”

In order to be officially diagnosed with this illness, a woman will need to undergo a laparoscopic procedure to identify the presence of endometriosis. Lakshmi did just that at the age of 36. She shares, “It wasn’t until a year after the surgery that I started getting really pissed. Like, ‘Wait a minute, I lost a week of my life every month of every year since I was 13 because of this shit, and I could have had this operation at 20 rather than 36?’” she told Women’s Health. “I’m shocked that a health professional didn’t say, ‘This is weird. Your cramps are above and beyond what they should be.’” Looks like I’m not the only one pissed off – and with every right.

You see, bearing this condition physically is hard enough. But when left untreated for years, a woman also suffers from emotional trauma. You start questioning yourself; am I am going crazy? Am I imagining this pain? Maybe I’m just really weak and this really is just normal side effects of getting my period? If that’s how you feel, I am here to tell you, you are wrong. Lakshmi is not the only leader speaking out about this illness. Halsey, American singer and songwriter, shares, “If you’re struggling with endometriosis or any chronic illness for that matter, you need to know it’s not something that makes you weak,” She continues, “It’s about what you have overcome and every battle that you’re in helps you win the war at the end of the day.”

Susan Sarandon (no introduction needed) wasn’t diagnosed with endometriosis until she was 40 years old! With the medical community constantly disbelieving her pain, she shares, “I did not know myself … If you have that kind of pain, it is not normal, it does not have to be, find somebody who will listen to you and make sure that they listen to you all the way.”

Singer Cyndi Lauper spent much of her 30s dealing with endometriosis. “I would do an album and go to hospital, then do another album and go to hospital.” I ponder this irony for a moment. The iconic legend who dropped “Girls just wanna have fun” and lit up our screen with her charm and beautiful smile, was actually suffering the whole time – in silence.

My hope today is that just a handful of you will speak about this condition to another handful of people. Those handful of other people will share what they have learned with another handful of people. And this pattern will continue again and again and again. Can you imagine how far we would come if this happened? Parents would be able to detect symptoms of endometriosis in their own daughters. They would be able to spare them the time lost that so many of us endured, with the power of early detection. Men and women everywhere would know the symptoms of this illness and pass on their knowledge to their friends, sisters, and nieces. They would be able to say, ‘No, you’re not crazy for feeling this way. Your symptoms sound like endometriosis – not psychosis. Let’s go get help‘.

Endometriosis has wreaked havoc on my life for years. I don’t have the words to explain the physical and mental anguish I, and so many others, have experienced due to this illness. But, I will absolutely hold firm in my belief that it doesn’t have to be this way for our future generations of girls and women. We owe them that. I will do everything in my power to fight this illness for the rest of my life, but I’m asking for your help. I’m asking you to be a part of that first handful of people to pass on this message.

Will you do that?

Here are a list of international support groups:

Canada

The Endometriosis Network Canada

India

The Indian Centre for Endometriosis (ICE) – Dr. Abhishek Mangeshikar (endometriosis-india.com)

Endometriosis-uk.org

The United States

Endometriosis Association – International Member Organization (endometriosisassn.org)

For a full list of symptoms: Endometriosis (who.int)

Main Image Photo Credit: www.pexels.com

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What Pisses Me Off: Why My Endometriosis Was Ignored For Years

by Jessica R. Gera

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