"I was using leftover pain medication from previous excision surgeries for my pelvic pain."
Real Talk With Endo
Endometriosis affects an estimated 1 in 10 people assigned female at birth, including women, non-binary, and trans folks — and there is no cure. In honor of Endometriosis Awareness Month, Rescripted has partnered with Emma Maxwell, a tireless endo advocate, to feature personal stories from real people who have been there.
In July 2023, I was rushed into emergency surgery for a torsed ovary with a 5cm cyst. My doctors keep saying I was okay—just a spastic pelvic floor—and wouldn’t do further testing.
I had migraines and GI issues before my first period. Heavy, painful periods followed. In 2019, an ER doctor mentioned endometriosis. My OB/GYN blamed me, suggesting therapy and antidepressants
THE STORIES
"Periods weren’t normalized at home, and I lived with pain."
"I’m happy because I have a diagnosis. But I’m sad because my body will never be the same."
"The most painful part of this diagnosis has been the doctors who gaslit & belittled me."
"At 11, my first period brought excruciating pain."
"Dismissed symptoms, wrong surgeries, and finally finding relief post-excision surgery."
"It took me 11 years to get diagnosed with endometriosis."
"I felt totally belittled... But we have this community that is together, and we see each person."
"Diagnosed at 28 after dismissals. Living with chronic pain, fatigue, and recurrent UTIs."
"Two months post-op, still navigating the struggles of an 'invisible' illness."
"I feel more supported now but still wish I had more."
"I missed social events and became extremely depressed."
"I had to go to the emergency 2019 because an ovarian cyst ruptured...first one taking my pain seriously."
" I will advocate for women with Endometriosis; we deserve better."
"Every doctor that saw me just told me I have dysmenorrhoea and I'm overreacting."
"Debilitating pain persists despite surgeries and interventions."
"Mild symptoms post-surgery, but infertility adds emotional weight."
"Medical care has improved, but I often feel out of place in the endo community as a young person."
"I was woken up by a stabbing pain on my right side groin that I couldn’t stand up."
"I often feel like my body is actively working against me."
"Movement is everything… Even if it’s a quick walk around the house on your worst days."
"I had 2 weeks of extreme pain that caused me not to be able to eat."
"My misdiagnoses were that I had either kidney stones or I was pregnant."
"I was finally diagnosed in 2023 at 26 years old after years of painful symptoms."
"I wish I never stopped taking the pill; maybe in that way, I could have prevented it."
"I was told it was normal for a 19 yr old to have to use a cane to walk."
"I've lost my peace of mind. It's like never knowing when I'm going to end up in the ER."
"All those years of feeling crazy flashed before my eyes and a sign of relief to know it wasn’t all in my head."
"When she told me that I had stage 4 endo I had no clue what she was talking about; I had never heard of it before."
"Physiotherapy has been a life saver."
"Dig deep into the research, arm yourself with the knowledge, advocate for yourself."
"After two years, he finally arranged a gynecological examination, and the specialist he recommended suspected endometriosis."
"When people ask me why I'm in a wheelchair these days and I explain it, they dismiss it as 'wanting attention'."
"Every doctor has been so dismissive, especially because of my age - even my gyn doesn’t believe me when I say something's wrong."
"After that initial flare-up, it was like clockwork; I would become swollen and experience pain as well as heavier bleeding every time my monthly cycle came around."
"Endometriosis is a dynamic disability and should be treated as such."
"Endometriosis is complicated, it makes everything confusing and blurry."
"I have excision surgery coming up in February and my life has been flipped upside down."
"It took 7 years to get my diagnosis, my symptoms started at 13."
"I underwent surgery for endometriosis and I finally got answers. I had all of the endometriosis removed."
"It wasn’t until I went to an endometriosis specialist that I felt like I was taken seriously and was not dismissed."
"A quick procedure turned into an over 4 hour surgery of her cutting out tons of endometriosis"
"I was told for years I couldn't have it based on my imaging."
"Most recently, I had an IUD put in for pain management and was told that endometriosis 'affects so many women and isn’t really a thing."
"It's important to remember that what works for one person may not work for you."
"Never stop advocating for your health!"
"I fought for answers, froze my eggs, endured pain."
"Periods shouldn't run your life; there's help and treatments out there."
"Endometriosis isn't just a period disease; it's a life-altering battle."
"You are not alone, and your pain and exhaustion are valid."
"Keep your head up! Listen to your body and take care of yourself."
"Pain is real but we're here for you all."
"Endometriosis exists, and you don't have to be scared to ask for help. "
"Keep pushing for answers. You know your body better than anyone."
"It's better to talk to every doctor you can until one listens than living a life in pain."
"Listen to your body, don't push through pain."
"Fight for yourself. Do your research. Reach out to people who have it."
"People don't always understand why I can go out when I was fine the other day."
"I felt I had to justify myself to everyone around me."
"7-month diagnosis journey. Initial symptoms: pelvic pain, nausea, fatigue."
"Endometriosis is a dynamic disease, reminding me painfully each month of its severity."
"Trust your body, rest when needed, and advocate for yourself."
"Never give up and always advocate for yourself. You know your body better than anyone."
"Endometriosis is something that takes time to figure out how to manage."
"I found myself at the ER due to pain that was commonly associated with appendicitis."
About the Creator
Emma Maxwell
I’m Emma, a 24-year-old passionate about advocating and sharing my experiences of living with endo & adeno, among other conditions. I care so deeply about this campaign - people sharing their real and raw experiences has been so impactful throughout my journey. It’s truly why I have a diagnosis and why I do what I do.
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