Even though it might be good to clear up the misconceptions about endometriosis first, I'll cut to the chase:
Endometriosis is common but varies extraordinarily in severities. Now no longer being able to eat or drink (even water) without horrible symptoms (including but not limited to incessant vomiting and severe pain), I can say that although endometriosis itself is not reportedly fatal, the symptoms are killing me.
It has taken me 20 years to get help for a disease that started baring its teeth as early as the age of 5, and the only way I’ve gotten help is by dedicated advocacy, both from self and few others, including my loved ones and one PCP among the seas of doctors whom I've seen. I have found help from a center in Georgia who understands my condition, its severity, and has the education, training, and skills to effectively treat me.
But the center is in GA – meaning my NC insurance won't cover it.
There are no excision specialists in North or South Carolina. I've been dismissed for so long and am now unable to eat or even drink water without immense pain and vomiting. I have lost 30 lbs since late April, and I am still losing weight. Many "treatments" have failed as they were not effective or even painfully counterproductive, such as endometrial ablation which ultimately is what ended my chance to ever have children of my own.
According to my history and symptoms, the doctor on my case says in addition to my laparoscopy and excision, I will likely need a bowel resection, a partial hysterectomy (uterus only) in case of comorbid adenomyosis, and a possible appendectomy. Estimated total cost to just initiate surgery/treament, (to pay for all the doctors involved as well as hospitalization) is over 20k. Total estimated cost for the hospital alone, not including anesthesiology and pathology is $65,000.
If you want to read more deeply about my fight with the medical industry - most of us with endo have one - you can read my endo story here.
MY PLEA & COMMITMENT TO THE FUTURE:
Unable to pay for even 1/4 of this on my own before July, I ask for your help. Because my endometriosis has gotten so much worse, my only income is disability for conditions associated with my endo. Once I recover, I know I'll be able to pave a financial future for myself.
I'm an artist and tutor with many passions and hobbies that I have been unable to commit to for almost a year now. I had been trying to get my work out there and continue pursuing freelance opportunities, but having to manage my symptoms became my life entirely. I was published in 2017 but have not created anything new for almost a year, which hurts as art is a big part of me. I had started work at a craft store and actually loved it too but had to quit due to the debilitating increase in my already existing pain.
I miss dancing. I miss getting up early, because the pain makes getting to sleep before sunrise nearly impossible. I miss cooking/baking for loved ones. I miss eating food and drinking water without pain. I miss playing with my cats and spending time with my Bf without my symptoms interfering. While I’ve never been 100% symptom-free, I know there is more to life than revolving everything I do around my symptoms’ management, and while I know there is no cure for endo, this surgery is my best shot at being able to live fully, dedicating myself to the things that matter most to me, including my health and happiness and aiding in the health and happiness of others.
Recovery from surgery will take weeks, maybe even months, and I'm aware of that, but for the first time in my life, I am genuinely hopeful and looking forward to the future. I want to volunteer, (and have already signed up), to teach the Endo EnduKit in classrooms so I can spare others from a further decade too, (or even longer), of feeling betrayed by their own body and the providers who are supposed to help them care for it. I want to take photos for and take care of shelter animals at the Humane Society and while I have signed up and gone to orientation, I have not been able to volunteer further due to the pain and other symptoms I deal with every day.
In Feb of '16, I made my purpose into healing and helping to heal. I'm an advocate, and endo has taught me self-advocacy, which is urgent when dealing with what is often called a "silent" disease. I know that I'll reinforce that purpose for myself more aptly when I am more physically able to take care of myself.
Please help me help myself so I can live the life I need. I'll pay your kindness forward. Any amount helps. Word of mouth helps. Even if you just learned something new about endo and what it’s like, please share, because that helps us all.
Thank you so much. I wish you great happiness and enrichment.