TW/CW chronic health issues
I don’t talk about this nearly as much on Tumblr as I do everywhere else. So let me give some context.
Hi, I’m Ophelia, and from the age of 12 until present my menstrual cycle has been what I can only describe as the seventh circle of hell. My family is old school southern. Which means if you have any kind of health issues, no matter what it is, you keep it to yourself. For 10 years I had no idea periods weren’t supposed to be like this. My mom took me to a gyn who explained it was probably endometriosis. And he knew this because, wouldn’t you know it, my mom had it!
But I wasn’t allowed a formal diagnosis. I was given every other bandaid known to man for my problems. According to him I wasn’t trying to get pregnant and hormonal treatment could handle any symptoms. I went another 10 years on synthetic hormones until my body decided that was enough. And on January 13th 2025 during my bilateral salpingectomy, they found stage 1 lesions on my pelvic wall, bladder and kidney.
I didn’t have excision during that surgery. My gyn knew what to look for, but didn’t have the skill to remove the tissue without potentially fucking me up even more. Instead we tried one last Hail Mary with an IUD, which fixed everything except the chronic pain and it was removed last year in November.
It’s now been over a year since that surgery and my symptoms, and about over a year since taking any synthetic hormones. My body had shifted back to baseline and my symptoms have gotten exponentially worse. My GI tract has basically nosedived around my cycle. I’ve been bounced around from specialist to specialist asking about the problems. Only to realize my symptoms are consistent with endo, and specifically when it starts to grow on your bowels.
I don’t know how much my followers know about endometriosis, but it’s (in my opinion) one of the hardest things you can get diagnosed with. Outside of hormone therapies, your only real shot at treatment is excision surgery. There’s no cure for my condition. It can and will spread to different parts of my body. I don’t just have GI problems. Cramps make me dizzy, they feel like someone is grabbing my insides and twisting them until I can’t see straight and I want to throw up. I experience neurological issues where I can’t feel my toes during the worst of my flares. And that doesn’t even tough the brain fog where I can’t thinking straight. Or the constant bone deep fatigue where I could sleep for 24 hours and never feel fully rested. Or the migraines where I’m left unable to function for days. I’ve missed school from the pain. I’ve lost job opportunities because I couldn’t get out of bed. I’ve cancelled so many big things in my life because I couldn’t balance both that and my chronic illness.
And I’m now looking at my third abdominal surgery in potentially 3 years to try and find some relief from a disease nobody really understands a thing about.
I feel so overwhelmed and at the end of my rope sometimes with this shit. And even more so when this single diagnosis is the single domino that has led to being diagnosed with so many other things. We’re looking at MCAS and POTS now, and we know for a fact my immunodeficiency has to do with endo now. It feels like it never ends.
If this vent has done anything today, I hope you learned something new about this disease and the bullshit it causes other people like me.
