Underinsured, Underdiagnosed and Anonymous: Endometriosis

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Endometriosis

I am continuing to write this anonymously because I continue to fear the social repercussions and potential backlash of publicly revealing my real name in association with my endometriosis and other health issues. I am uninsured and told by many, uninsurable.

We left off from Part 1 of my story with a tentative diagnosis of endometriosis, a ruptured ovarian cyst, and ever-increasing doses of oral contraceptives. At that point in my life, I was scared, in pain and worried that I and the doctors should be doing more.

But, as it turned out, there was not much more that I could do. The doctors said that even if it wasn’t endometriosis, the pill would probably still be the least invasive and least risky treatment option available to me. They told me this without any intention of scheduling further abdominal inspections, pelvic imaging, endometrial biopsies, or blood draws for biochemical markers, despite my pleas for each. Then again, they had confirmed my endo’ diagnosis without a laparoscope, or CA-125 antigen test, as it was. So, what else should I really have expected from them now? Life on oral contraceptives continued because, apparently, my only other choice was living without a uterus (and risking paralysis due to prior cervical vertebrae injury) at only twenty-five years of age.

I had never had long, frequent, heavy, or uncomfortable periods, much less menstrual cramps, as a young teenager. But, as a woman on COCPs in her mid-twenties, I was experiencing altogether nonexistent cycles, regular breast discharge, ceaseless bloating, and unrelenting gastrointestinal pain and pressure (on top of chronic neck and back pain from the past car accident). One silver lining to my proverbial cloud was that I had finally regained most of the neck control and movement previously lost in the collision. Another consolation to this difficult situation was that I had also saved up enough money, working through physical therapy, to return to school. And, maybe best of all, I had found (without trying) a steady, supportive, and understanding boyfriend, who was not only my match in every way, but who always stayed by my side, through the ups and downs alike. Little did we know the coming financial and health woes to befall us, yet again, over the next few years.

Fast forward about three more years into the future—I had transferred to the university as a junior during the Fall term. My boyfriend and I had been together, going on strong, for four years. And, I had been working part-time at a job that I loved for nearly two years. The future again seemed bright. Healthcare access, however, remained bleak.

The COBRA benefits from my old employer had long expired, not that I could have afforded them at $600 per month anyways. I didn’t qualify for health insurance at my new workplace because I wasn’t full-time there, owing to a loaded class schedule on-campus. And, the only medical coverage that I had been able to afford since leaving the other company was a short-lived, hybrid POS-HMO plan, which I ended up having to cancel early as nobody in my area would accept it (there went another few hundred dollars, I couldn’t afford to lose, down the drain). We had been working around the system, paying out-of-pocket for generic prescriptions, and general lab procedures, at local understaffed health clinics, since no one else seemed willing to work with us. This got us by (it had to) until an unexpected slip-and-fall accident that December rendered a hidden colon tumor palpable in my lower body (something we wouldn’t learn for another four months or so).

The ER wouldn’t treat me, and only served in referring me to a GI/Endoscopy specialist, who in turn refused to see me because I didn’t have insurance. A major medical carrier subsequently denied me coverage as uninsurable due to pre-existing conditions (namely my C2 fracture from nine years earlier, and my endometriosis diagnosis from four years prior), essentially blacklisting me among all other healthcare providers. I couldn’t even qualify for government assistance of any kind. I had come close to dying in just a few short months without knowing what was wrong with me, and we were running out of time and options fast. That’s when my boyfriend popped the question, to get me on his insurance, and to save my life…

To Be Continued.

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Underinsured, Underdiagnosed, and Anonymous: Endometriosis Part 3

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2 Comments

  1. It is disappointing not only that there aren’t more affordable, and less-invasive, hormone testing options *readily available*, but also that some of the current choices we do have are still not covered by health insurance today.

  2. As I read these stories, I can’t help but think what if this were me or my daughter. It says a lot that in the case of anonymous and some of the other women who have shared their stories, that lab tests were not forthcoming, despite repeated requests and that even with the labs, diagnosis was not certain. Many suggest that hormone testing is not warranted and that the clinical reference ranges are so broad as to be diagnostically irrelevant. If that’s the case, then why are we not testing every girl and woman from menstruation through menopause to help develop more meaningful ranges? Why don’t we measure hormone levels when women are still healthy as a baseline and then annually thereafter?

    I am also struck by the lack of treatment options. I think it is difficult for many understand how widely oral contraceptives are used for things other than contraception until stories like this come to the fore. It is for women like anonymous that I started this company.

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