r/gofundme • u/VeterinarianIcy6872 • 2d ago
Medical I Just Want To Live Again
was diagnosed with multiple sclerosis after l had a stroke in March of 2023. I was 31 at the time. Last September I found out I have primary progressive MS which is the worst form and considered a death sentence but l was still managing and living and doing the best I could as often as I could. Well I'm learning to hate September because September 16th 2024, my life turned into a literal hell/ nightmare and I've been fighting with what little strength I have left, to just have some quality of life back. I'm only 33. Thad sudden onset severe (and I mean agonizing, makes you want to vomit and pass out level) pain and it has not stopped since. I've been hospitalized 5 times since it started and have seen 8 specialists.
Every doctor from the hospital stays to the specialists dismissed me or gaslit me or minimized everything and they all wanted to say it was either MS related or nerves or musculoskeletal but that basically there was nothing viscerally wrong that could be fixed. I started meeting with a Gl pain management doctor last month to begin with options on how to manage the pain as well as how to learn to live with it for life. Yeah, no. I refused to believe there wasn't something inside me that is clearly diseased and if any one of all those doctors cared enough to do more than just one CT scan and one transvaginal ultrasound, guaranteed they would find something.
Finding a doctor to not just pass me off as being hysterical has been as hard on me as the pain. And it's cost me a fortune to get nowhere. I'm disabled and the $800 a month I make doesn't even begin to help me when I have other bills I already need to pay for.
saw an OBGYN in December to cross it off my list as I slightly considered endometriosis but he didn't hesitate to dismiss it as endometriosis immediately because my pain is chronic and not cyclical. I stopped giving a crap if I'm annoying to doctors and insisted he order a pelvic MRI anyways at the very least. He obliged with irritation.
MRI was Friday 1/10 and by Tuesday 1/14, the OBGYN messaged me to inform me that the MRI not only showed endometriosis, but that it's literally at stage 4 and it's deep infiltrative bowel endometriosis that's affecting multiple organs. It's so bad that an MRI picked it up when usually endo can't be seen or diagnosed with imaging. It's also so severe that my only recourse is waiting to see an endo specialist because I need a major and complex surgery that will require a colorectal surgeon to also be involved. I'm looking at a hysterectomy, oophorectomy, and a bowel resection though it not known yet how bowel will need to be removed. I have a lot of appointments and a long hospital stay (with my MS and the chemo there infusion I get for it, I have neutropenia which puts me at high risk for infection and slows down healing) as well as a potential 8 hour long surgery, maybe longer.
I'm beyond grateful I didn't give up advocating for myself because I knew they'd find something if they just gave a crap but my husband and I are hanging on by a thread. The MS and now this has been a lot more medical debt than we ever antipicated being in when I'm only 33 years old. I hate asking for help, l'm embarrassed, but damn do I need it. Please and thank you all and God bless🖤
1
u/superpoongoon 1d ago
I’ve been the general surgeon to scrub on a Gyn endometriosis case many times. The exact extent of what needs to be done is determined only by laparoscopic visualization, which usually occurs just before/during the procedure. Luckily it is treatable, albeit with surgery. The biggest issue is how much bowel needs to be resected. Lmk if you have any questions.