Heidi's Medical Expenses: Stage IV Endometriosis

Hi, my name is Heidi, and I’m asking for help to fund the surgery I need for my stage IV endometriosis. Insurance won’t pay for this surgery. I’ve waited to ask for charity, but my situation is getting worse every month. I’ve just learned I have a bleeding disorder, which is hastening the damage to my organs and increasing the risks of more severe complications if I wait. Thank you for reading my story and considering donating toward my surgery fees.

Here is my story:

I first experienced endometriosis symptoms at age 19; debilitating pelvic pain would stop me in my tracks and drop me to the ground in the fetal position. I saw the campus nurse, my primary doctor, the gastroenterologist, gynecologist and colorectal specialist over the course of a few years. I had spent a few months living in and volunteering in a slum in Calcutta, and doctors thought perhaps I had picked up a gastrointestinal bug there. I was diagnosed with Irritable Bowel Syndrome, as so many women with endometriosis are, and the doctors gave up trying to diagnose me.

By my early 40s, I used a walker for at least half of every month because of foot drop. I couldn’t twist my body side to side or lift my legs. I had become a shadow of the active mom and volunteer I once was. I was referred to pain specialists and even offered back surgery, which I declined. I was sent to physical therapy for two years. I tried acupuncture, myofascial release, and chiropractic care. I changed my diet. I meditated. Nothing worked. I became increasingly crippled and anemic, hemorrhaging blood for several days every month. I put on a brave face for my kids, but inside I was in constant pain and losing hope.

I began to feel a hard mass, the size of a tennis ball, growing in my pelvis. I presented to the ob/gyn’s office using a walker, looking 8 months pregnant. After an ultrasound, the specialist said, “It’s a zoo in there”. Cancer was discussed as a possibility, and this finally prompted exploratory surgery.

The average number of years for a woman with endometriosis to be diagnosed is 10 years.

I was misdiagnosed for 27 years.

By the time I had exploratory surgery, my internal anatomy was so diseased that the surgeons were unable to save my right ovary and fallopian tube. My organs were tangled in a web of adhesions from the decades of untreated endometrial lesions bleeding into my pelvis. This was the cause of my inability to move my body normally. My surgeon didn’t have experience with endometriosis so she burned away the web of scar tissue and cut out my diseased ovary and fallopian tube and the endometrioma cysts they encased, and sent me home without looking for or removing the endometrial lesions causing the damage.

That was four years ago. The most recent MRIs explain my continued and increasing pain: lesions that were left in place after my last surgery continued to bleed, scar, and wreak havoc. I will now lose my uterus, cervix, appendix, and my remaining fallopian tube. I’ll require cystectomy of my remaining ovary, and the removal of lesions and adhesions from my bladder, ureter, and rectovaginal space. I may also require resection of my colon and my diaphragm, according to the nation’s leading endometriosis surgeon who reviewed my MRI and medical files.

The only effective treatment for endometriosis is called “excision”, whereby endometrial lesions are cut completely out of the tissue, leaving clean margins, the way you would do with cancer. Only a handful of gynecological surgeons are trained in how to identify and excise endometriosis. I’m lucky; I’ve found Dr. Sinervo. He is one of the best and he is willing to do everything needed to restore my anatomy and remove the disease.

I will need to travel out of state to the Center for Endometriosis Care in Georgia for surgery. The costs I’ve been quoted come to over $50,000 after all the discounts I receive as a self paying patient at the hospital. These discounts only apply if I pay all at once, prior to surgery. Insurance does not cover the costs of excision surgeries because the codes for excision are not recognized by insurance companies. I cannot purchase insurance that will cover costs for the out of state hospital fees, either. So we are on our own. That’s why I’m asking for help; I’m out of time and options.

I know life is better when we help one other. It has given my life joy and meaning to be of service to others. I’ve been a birth doula to pregnant girls and women who cannot afford one, I’ve translated for doctors in the slums of Calcutta, I’ve volunteered teaching art, PE, and gardening in public schools for years, and since I’ve lost much of my mobility, I still volunteer as a teacher and consultant for school and community gardens when my body allows it. Now I’m asking for help.

Thank you for reading my story. I’m forever grateful for any support you can give.

If you’d like to learn more about endometriosis, you can find information at https://www.endofound.org/.

If you know a pregnant woman unable to afford a doula and she lives in San Diego, you can find programs at UCSD Hearts and Hands Doula Program or at Operation Doula which serves military families in San Diego.

If you would like help with your garden or at your school or community garden, reach out to your local Master Gardeners. Here in San Diego we can be found at https://www.mastergardenersd.org/

Thank you!!!