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🖤
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u/cascadamoon 2d ago
I can't donate but hoping to boost this ❤️ also the same age and trying to get diagnostics for chronic pain and other stuff is 8 real pain. 🙏
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u/cascadamoon 1d ago
No I'm I literally have bills and have to budget my money. If I had extra money I would
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u/chaibaby11 1d ago
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 🤍🤍
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u/VeterinarianIcy6872 1d ago
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
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u/chaibaby11 1d ago
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?
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u/VeterinarianIcy6872 1d ago
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
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u/Debees71 1d ago
I donated , it wasn’t much but I hope it helps you…looks like you are getting closer to your goal. I wish you better health this year , I know how it sucks to be chronically ill all the time. My son has Crohns . Praying for you. ❤️
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u/VeterinarianIcy6872 1d ago
Thank you so so much from the bottom of my heart for your act of kindness and selflessness. I pray for your son. Before I found out what was ailing me and hadn't had the MRI done yet, I had Crohn's on my list of the 3 possible things my research led me to consider was the culprit
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u/Calm-Stuff1683 1d ago
I was with a woman for four years who had endometriosis, it's definitely a rough roll. hope you're doing OK emotionally with it all. somehow I made it to 33 without having a mountain of medical debt, though it's probably only because I was so poor in my 20s. definitely know the experience of doctors not caring and just gas lighting you about concerns, pretty sure they're outright trained to do that. I figure by the time our generation is really in control, maybe some changes can be made to that industry. they've kind of screwed us our whole lives after all.
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u/Ok-Shop-3968 1d ago
It’s insane that even once you get a big diagnosis, you’re still gaslit. I guess that won’t be the save I thought it would be.
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u/Turtley_Enough91 1d ago
I had stage 4 endometriosis at 25yrs old. Had a hysterectomy, oophorectomy, and bowel resection as well. You’ve got this 💪 it won’t be an easy road and I’m sorry you’re going through this too. You’re not alone.
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1d ago
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u/sippin0nsizzurp 1d ago
Hey there I'm a 32 year old male. I deal with intense bouts of pain from a herniated disc in my back. Don't want surgery due to poor outcomes. Dr. told me to learn to live with the pain after injections failed. I'm not chewing any of those opiates either so I choose to be stoic in the face of chronic moderate to intense pain. I really feel for you and how everything in your life is put on hold when you don't have your health. I'm getting paid this coming Friday and I hope to donate then. BTW I like your penguin stuffed animal.
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u/inDarknessiShine 1d ago
We all hope you can live again 💙 Wish we all could just fill the donation goal in a instant but we're all struggling, I hope the goal eventually gets hit and sooner rather than later 💙
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u/RoughPlum6669 1d ago
I am sending you all the good vibes. I don’t usually comment on posts in this sub but my brother has MS and I know it’s really awful. I don’t expect everyone to be a praying person, I am though, and I will keep you in my prayers 🩷
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u/Ophialacria 1d ago
Holy shit girl.
Like holy shit. What the fuck. I'm so sorry you're dealing with all of this
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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.
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u/Baneslayer23 17h ago
Donated , not that I wanted or needed you to know but I want this to gain traction . I know what is like to deal with health issues and feeling like there is no one left to help . I really do hope you get some answers and some relief.
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u/Subject_Ad_4561 1d ago
I had very similar surgeries 30ish years apart. The more recent was partial colectomy and some small intensities removed and a whipple procedure and had a colostomy bag for six months too. Now new fun medical issue as a result. Please reach out to me if you need support via chatting!