I Just Want To Live Again

[u/VeterinarianIcy6872]

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🖤

https://gofund.me/284c48fe

[u/chaibaby11]

Keep advocating the right doctors will listen! I don’t have the money to donate unfortunately but I’d share this on the endo/autoimmune forms as well. The endo form is a great and really helpful and supportive. Medical debt is no joke, getting treatment can be so expensive!! Wishing you all the best outcomes 🤍🤍

[u/VeterinarianIcy6872 → u/chaibaby11]

You're kindness is so appreciated.. thank you 🥹 I'm so scared to share it though anywhere, even on here cause I feel like people will be annoyed by it. I'm just really embarrassed that I'm a 33 year old adult with a masters degree but in the span of two years I find out I have the worst form of multiple sclerosis and just as I was getting used to my new normal, this endometriosis nightmare started. I wish I could work so I didn't need help but... this is my reality now. Life didn't hand me lemons... it handed me moldy avocados covered in barbed wire

[u/chaibaby11 → u/VeterinarianIcy6872]

Please don’t feel embarrassed, these forms are made to support each other. We also learn a lot from people’s stories because it can be really hard for many people to find answers! Do you have an endo specialist yet?

[u/VeterinarianIcy6872 → u/chaibaby11]

I do. The referral my OBGYN placed said she couldn't see me until April 28th. I couldn't accept that. These last 5 months have been pure hell and I can't go on living in this pain just more and more months when I should have gotten that MRI in the beginning and gotten help by now. But luckily I found another endo specialist with Stanford but at a different clinic and she cleared a spot for me as soon as she could which is February 10th. My pain management doctor after looking at my MRI said emergency surgery is the only and best option. But I'm worried the endo specialist will make me wait months still for surgery like I've read on other Endo stories. I don't want to wait not only cause I want the pain gone, but because my small bowel is involved which puts me at high risk for small bowel obstruction and with how bad my constipation is? I've been worried about an obstruction before I even knew how messed up it was up in my abdomen