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 💛
I will say in addition to being allergic to pet dander, unfortunately I am also allergic to the protein in their saliva. So if they lick me I still break out in hives. It’s a really unfortunate curse but I’m trying to find a way around it WITH BALD CAT
I have always adored hairless cats (Sphynx) but I’ve never gotten to see one in person. I want to touch it’s wrinkly skin and put oil on its little dry body and put shoes on it. I am allergic to cats and dogs and always wondered if a hairless cat would be okay 😭😭
I am in a constant state of zoned out and dissociation. I feel like I’m always in dream land in my head. Making up stories, continuing life but just in my head. It’s nearly 24/7 unless I’m engaged in conversation, even then it can happen.
I always feel pulled in so many different directions I never know where to put my time and energy.
There’s streaming / gaming content
Fansly / OF / Cosplay content
ASMR content
THERES TOO MUCH TO DO so I zone out and do the wordle
Sometimes I read a good heartfelt story on Twitter and I think aww that’s so nice and I go to like it and I stop myself and just wonder if I read ai-slop 🥲 and keep scrolling
@g_jodey It’s not even inconveniencing it hurts so god damn bad and the intense hormonal fluctuation makes me want to kms. Like I can’t think straight and I feel like a shell of who I am during it
I don’t really know what the issue is. I mean I know I don’t have any friends that live near me so that could be one reason or maybe friends are a lot of maintenance and I’m not good at it or maybe a different reason altogether I don’t know.
I feel like most if not all of my in person friend-relationships all fail. I am not friends with any of my high school or college friends aside from like 2 and even then it’s just texting happy birthday once a year
I have a hard time buying gifts for people because every gift feels like clutter to me unless they specifically asked for it and I know they want it. I don’t know why in my eyes a gift should aim to fill a need. Everything else seems like extra junk.
I’ve been wanting to commit one full day a week for being screen-free (no tv, no computer, minimal phone) but I’m not even sure if that’s possible with being a content creator as my job. Even on nights & weekends I feel compelled to reply to comments, check insights, etc 😭
It’s a beautiful day to have a beautiful day. I’m slowly finding the best morning routine for me and I’m really enjoying switching up the stream schedule to earlier in the day. I feel like I’m finally getting to have normal work life balance and a LIFE 💜
I’m trying to read a non-fiction health and wellness book and I swear I can only read one paragraph before getting distracted by my phone. Am I cooked bruh WTF I WANT TO READ THIS BOOK 😭
Anyways I think I should start noting my early morning internet searches because I feel like my morning thought processes need to be documented.
9 am search today:
“are there any animals that dont get eaten at the top of the food chain”
Ill let you know what I find out
Next question / thought.
Who the hell and how did they make medicine such as ibuprofen. Was it an accident? Who ingested it first to test it? “Oh I feel slightly less pain”. Ok so it works? What chemicals were they throwing together and how??
@g_jodey No I don’t know how to get dolled up! Like if I went to some fancy event I look the same. Just in a dress. Lmao it actually bothers me so much
I always love seeing those transition videos where someone changes into really pretty hair / makeup / outfit and I feel like everytime I try one there’s no difference because I don’t know how to do makeup or hair so it’s just changing outfit 😭 I always look the same