katrina bo bina

@InMyThoughts999

burner acct - evolve or repeat 🦋 I am free

Joined May 2023

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173 Followers

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InMyThoughts999 retweeted

Katrina ᢉ𐭩

@ttv_katrina

6 days ago

Last fall, so many people supported me when I shared that I needed emergency surgery for a serious illness. I didn’t fully divulge into the disease because I was extremely scared and wanted to retain some semblance of privacy. The more that I learn about this disease, the more I realize that silence is part of the problem. I have Stage 4 Endometriosis, the most advanced, most severe classification of the disease. For those who don't know, endometriosis is a chronic disease where tissue similar to the uterine lining grows outside of the uterus attaching to organs, the abdominal wall, essentially any organ in the body, causing inflammation, scar tissue, and debilitating pain. It is said to affect every 1 in 10 women worldwide, roughly 190 million people and that number is heavily underrepresented and under-recognized, due to how incredibly difficult the condition is to formally diagnose. When I was diagnosed last fall, I had a 9 cm endometrioma completely encasing my left ovary, with endometriosis lesions covering my abdominal wall, ligaments, pelvic wall, fallopian tubes, and surrounding organs. My surgeon, one of the best endometriosis excision specialists I could find, told me it was one of the worst cases she had ever seen in 20 years of practice. I had my surgery on December 17th. I am now facing a second surgery less than six months later. This week's ultrasound found a new 5 cm endometrioma on my right ovary. I started having pain again in April. I am truly devastated and in pure shock in a way I don't fully have words for yet. There is no cure for Endometriosis. Endometriosis will keep coming back until a cure is found. Surgery buys time. Hormonal therapy temporarily manages symptoms, but nothing stops it. This disease behaves a lot like cancer: invasive growth behavior, angiogenesis, the ability to spread to distant sites, and recurrence after excision. Researchers have described it as sharing molecular similarities with malignancy. Having endometriosis, especially with ovarian endometriomas and deep infiltrating disease like mine, increases the risk of developing ovarian cancer by up to 9.7 times compared to the general population. The American Cancer Society now lists endometriosis as an official ovarian cancer risk factor. “Why haven’t I heard much about this disease?” Did you know we have spent more money studying erectile dysfunction than endometriosis. From 2019 to 2023, funding for erectile dysfunction companies was six times higher than for endometriosis, $1.24 billion compared to $44 million. Endometriosis received just 0.038% of the NIH's entire 2022 research budget for a disease affecting 6.5 million women in the US alone. And the research that has been done on Endo? Some of the most-discussed studies on endometriosis include one examining how the disease affects the male partners sex life and another, published in a medical journal and later retracted after seven years of controversy, was to evaluate and rate physical attractiveness in women with and without endometriosis. These are the studies being done for endometriosis. Meanwhile, the average time to official diagnosis is 7 to 10 years. We are told our pain is normal. We are handed birth control as the only solution and sent home but the disease keeps spreading. I am sharing all of this because I have a platform and because I was one of those people who didn't know. I didn't know until a mass the size of a large orange had taken over my ovary. If you have been dismissed, if something has felt wrong, please advocate for yourself and push for answers. If you want to help, you can donate directly to The Endometriosis Foundation of America. EndoFound places particular emphasis on the critical importance of early diagnosis and effective intervention while simultaneously providing education to the next generation of medical professionals and their patients. We need better research, better answers, and hopefully one day, a cure. Thank you 💛

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katrina bo bina

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