Help Jax with endometriosis-related medical costs

TLDR: I've had 8 surgeries in the last 5 years and have been hemorrhaging so much money on trying to remove endometriosis that I'm reaching out for community care. Almost died in a health crisis 2021-2022 and had to travel for my most recent surgery 7/11/23.

Sincerely appreciative of any help, including sharing this.

FULL STORY (it's long):

Howdy All,

My last GoFundMe was for an emergency surgery in 2020. That surgery involved an endometrioma (blood cyst) that scared my incompetent gyno enough to rush surgery, which also included endometriosis removal. Welcome back to the saga!

I'm going to give a NOT quick overview of life since then to help give an understanding on why I could use financial assistance now.

So after the 2020 surgery, I moved to Austin for an internship in the TX Legislature literally 2 weeks later. Not wise! My health issues continued and sparing you lots of unnecessary details, I ended up in a health crisis Fall 2021.

2021 involved multiple urgent care and ER visits as well as an onslaught of medical appointments (Jan 2022 included 24 medical appts in the first 18 business days before surgery). I hadn't been able to work since August 2021 and the work I was doing before that had unliveable wages. I moved in with a classmate in August and the crisis initiated in October.

From there, it was complete hell. I couldn't walk up the stairs to my apartment without help or lots of breaks. I couldn't shower/bathe without (nearly) passing out. I'd often need to rest 30-90 minutes after bathing and learned how to tell when my nervous system was about to give out so I could get to my bed and collapse there. I couldn't cook, could hardly care for myself, and was in so much pain that every day I thought I was going to die.

I was terrified to go to sleep every night because all my organs would convulse/spasm so intensely, I was sure I wouldn't make it through the night.

Every night.

Fortunately, I woke up in excruciating pain every couple hours. So the reminder that suffering wasn't ending was a bitter victory every time I opened my eyes. (sarcastic joke)

Anyway ... I found out I have some kind of Dysautomia that was exacerbated and made permanent by (long) COVID. YAY!

After doing all kinds of PT , testing, intervention methods, literally appointments almost every day, I finally got a surgery date, late Jan 2022. The surgeon is someone who is highly regarded as one of the best endo surgeons in town (Houston) and I was elated at how competent she is.

I accrued about $11K worth of debt and spent over $30K on medical costs. I'm not including lost wages, cost of living, and all the other things that keep our lives moving because I didn't have the capacity to do so. I also utilized as much financial assistance as I could; I got my $14+k in medical expenses (from Jan 2022 alone) brought down to $3.5k. (The non-profit Dollarfor can help you apply for charity care.)

I worked tirelessly to lessen my financial burden while my body was literally trying to kill itself. I ended up losing my housing (fairly traumatically) and moved in with my mom/stepdad 2 days before surgery (including a full hysterectomy). My stepdad created a toxic living environment so as soon as I was cleared for normal activity, I moved in with my bestie Kasey and her hubby.

Let me say, best roommates I've ever had!

I finished my Fall semester and didn't plan on returning until the following Fall. Then in March I found out I was going to lose my student health insurance if I didn't enroll in classes. This was literally 7 weeks after surgery. My badass of an advisor pulled a hail mary and got me in an elective the day it started. Whew, I've got my insurance (with fully met deductible and out of pocket exceeding $8,500)!

But ... no financial aid since I wasn't enrolled in enough units. yay. So I'm borrowing money from people and applying to scholarships like crazy. I get a $3k scholarship , but don't receive the funds until December. yay. It's not enough to keep me from drowning but it's a big chunk of money I need now.

May comes around and finances are looking scary. So I trust my intuition and participate in Arena Academy, which lands me a campaign gig. I remember, the first week of the job. I was excited. I pushed myself too much to prove to others I'm worthy of being there. And I have a heart-to-heart with my supervisor about how I know my life will never be ripped from underneath me again (it's happened 3-4 times at that point).

But the health issues persisted. I thought it was the Dysautonomia and kept adjusting my lifestyle. In October, the endo bloating came back. My surgeon brushed me off and said to monitor it.

I finally pay off the debt! YAY!

I move into my own place Feb 2023! YAY!

I get a job working in the TX Legislature again, for the Select Committee on Health Care Reform. YAY! I leave my Houston apartment and live with a very kind couple who allow me to stay with them at no cost. YAY! My supervisor is great. YAY!

I end up in the ER on my second week. boooooo!!!!

At this point I'm positive my endo is back. I quit my job week 3 and move back to Houston. I land a remote gig immediately working with the Texas Civil Rights Project, with amazing bosses. YAY!

My surgeon recommends hysterectomy as my next option and I remind her we already did that. Since she didn't remove all the disease and forgot about my hysto ... time for a new doctor and I've got to get it right this time. I get MRIs done and endo is clearly visible and identified.

I pull out of grad school again because my body absolutely can't handle work and school and I'm definitely triggered. PTSD was triggered earlier but now I'm like, "I can't let myself get so bad I almost die again. I can't lose my housing. I can't do this again." I'm crushed because I'm 7 assignments away from graduating. I was listed on the commencement agenda. I don't know how long I can keep going like this.

^^^Damage from years of using extreme heat to manage pain^^^

Grief aside (there's a lot of it-I say this while chuckling), I reached out to a world-renowned specialist in NY and schedule a consultation. Upside, endo is all he does, he teaches lots of students how to remove endo, he's part of summits and conferences, he works internationally, he's great with patients, lots of patients say he saved their lives. This is the surgeon!!

Downside: surgery cost $9,750 (all due beforehand with the actual cost of surgery being a lot higher; they cap patient cost at $9,750). Alright here we go credit card, this is why I have you.

But that doesn't include the facility fee, which will be at least $1,500 (gotta see what insurance does). Nor does it cover anaesthesiology (mystery cost for 3-4 hours of surgery). I needed to bring a caretaker, thank you from the bottom of my heart Kasey. And I wasn't going to ask Kasey to pay her way to NY cause it be pricey. So it was about $3k in flights (getting there and getting back was horrific. Another long ass story I'm willing to share). And housing was about $2,300.

So I put about $15,000 on my cc within a week for this surgery. I still have medical bills I'm paying off on top of this for MRIs, an ER visit, lots of lab work, CTs, pelvic floor therapy, and all kinds of things. Not to mention, I'm expecting that facility fee and anesthesia bill soon.

My goal is set to $20K in anticipation of the fees that GoFundMe will take out of the total. I will likely raise the amount when more bills come in.

I sincerely appreciate any gift you can share to help me get to a comfortable spot again. I am literally using all my energy to work in spaces facilitating greater equity and social justice. So investing in me means investing in the betterment of our society... before it all collapses in 2050 (JOKE). *uncomfy cheesy smile*

Please share this in any way you feel comfortable. !!!Thank you Thank you Thank you!!!

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There are millions of people suffering from endometriosis and new research shows it as active in children who haven't started their periods and in men. If you want to make a difference in someone's life, look into donating or helping local/state/national organizations working on improving care. Pelvic floor therapy is insanely expensive, you can help with those costs. Create local community care programs. Call Congress and request an increase in funding for endo research.

I want to link info but almost everything out there either doesn't cover the entirety of how endo can impact people or is full of wrong information. It is a horrific, whole body disease that disables many people. Unfortunately, most people with endo don't qualify for disability bc it's not listed as an option in the "Blue Book" that is used to qualify people.

There's also adenomyosis, which is basically the same thing but in the muscle lining of the uterus. If you or someone you know would like to reach out for information and help figuring resources, care, financial assistance, ANYTHING, reach out to me please! Hysterectomies help adeno, they DO NOT HELP ENDO!