Medical bills for an Endo Warrior

Endometriosis affects an estimated 200 million women* worldwide and approximately one in 10 women* in the U.S. There are est 40,000 gyn in the U.S. and very few of them are trained to adequately treat or excise this complex disease. It strikes women* from all racial, ethnic, and socioeconomic backgrounds. There is no known cause of the disease and no cure, though it is treatable by excision surgery. Because of the lack of education about endometriosis, pain or other symptoms are often dismissed or misdiagnosed. This often causes a delay of a decade or more in receiving the proper diagnosis of endometriosis. [Endofound.org]

This disease spreads throughout the pelvis and can affect any organ it reaches. If left untreated, aggressive cases of endometriosis have spread to women’s diaphragm, lungs, and it has even been found in the brain. Untreated endometriosis cells can become cancerous in serious cases.

I began my journey with endometriosis after over a decade of symptoms dismissed by multiple gyn doctors, being told that the pain was “normal” and to “just go on birth control”. I was on birth control for 12 years, and still had worsening pain and symptoms. In early 2018 I went into surgery to explore, and I woke up missing 5 organs and an answer. I had stage 3 endometriosis, interstitial cystitis, and a condition called adenomyosis, which is only relieved with a hysterectomy. I had lost my fertility at age 27, but gained a sense of relief that the years of pain were validated.

After the first surgery, my quality of life was restored. I was relieved of 80% of my daily pains, but went on to be diagnosed with other autoimmune disorders over time. When your body is in pain, sometimes you miss symptoms of lesser conditions.

I began having lower back pain again in late 2022, it wasn’t severe but I had an MRI to check on it. In March of 2024 my symptoms began escalating, some felt similar to pains I had before my first endometriosis surgery. I began trying to contact my excision surgeon, he had relocated and his former practice took months to return my calls and advise me of his new location. I heard back in June. At this point I felt the endometriosis had returned, but planned on scheduling surgery for the winter, my symptoms that felt like endo were not severe, I thought I had time. In August I collapsed from excruciating back pain. I could barely walk all of a sudden. I sought chiropractic and orthopedic care, completed PT, and the pain was decreased slightly, but no cause was determined, my spine being found mechanically sound. I was out of work for 3 months. I still had days where walking was too painful.

I finally had my consult with the endometriosis specialist in October, an order for surgery scheduling was sent, then I never received any sort of confirmation. I made many attempts to contact and confirm, but was told the doctor was out on leave, that I would be scheduled when he returned. That call was never made. In mid December I went to the ER with increasingly severe abdominal pain, it wasn’t gallstones and was given heavy pain meds. By this point I had contact with my surgeon, and kept him updated, I let him know I had been unable to reach scheduling. A week went by and the abdominal pain moved lower and got even more severe, I drove myself to the ER on Christmas morning and was diagnosed with constipation. I began a regimen of medications to relieve this, but was not fully responsive; another ER visit on 12/30, this time I was unable to drive myself, the pain was just getting worse. A different set of medications were prescribed and were partially effective. I was still getting waves of intense abdominal pain. By this point my surgery was scheduled for 1/10 and I was just keeping myself hydrated and alive, I was unable to eat solid food. I knew the cause had to be endo-related, as this disease doesn’t typically show up on tests or scans. My condition worsened, I felt completely disconnected, my mind had gone into a total freeze response.

Surgery day came, and confirmed stage 4 endometriosis. I had an ovarian cyst, my colon was attached to an ovary/pelvic sidewall by the disease, causing paralytic ileus and a blockage in the sigmoid area. There was endometriosis on my rectum and rear pelvic wall, likely causing the spine pains. The human body is wild, my nervous system is in shock.

As I look towards recovery, I will need continued care and treatment for the stress on my GI system.

I am asking for help recovering my finances. I do have health insurance, but as we know, health insurance doesn’t cover all costs; with everything that happened to me in 2024, I am in debt from missing work, trying to get by, paying for treatments and medications, and now face the surgery bills, and an additional 2-3 months without work. Due to the damage endometriosis caused to my colon, I have to start my journey with GI care and a nutritionist to see if my system can restore proper function. I have managed to support myself up until this point in life, and it is truly humbling to have to ask for help.

I shared my story to help folks understand the severity of endometriosis, educate on how common this is, and how difficult it has been to seek proper treatment. I have had to advocate for healthcare, to anyone out there in the same boat - do not give up advocating. Endometriosis may not have a cure, but a good excision specialist can alleviate the disease for a while.

I graciously ask for any donations to help me get my life back on track. Please share this fundraiser.