Today’s story is about fighting with health insurance, with way too much health details for the squeamish. You are warned.
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Scheduled my surgery two months ago. Six days ago I get a letter from my insurance saying I’ve never tried any other treatments for my condition so they won’t approve surgery. Um…whut? They have literally been paying for every kind of treatment possible over the last six years and they’ve all failed. So my doc sends a letter of contestation and I call the insurance who says my doc needs to call, not send a letter. So she calls. And talks to their approving doc who says, nope, HE knows better than a GYNECOLOGIST AND HER PATIENT and that all I need is a laprascopic DIAGNOSTIC surgery, not a treatment surgery at all, so he won’t approve it. But she’s free to send another letter if she wants. So I call, and yell at EVERYBODY and file an urgent appeal because at this point it’s less than a week to my surgery date, thanks to them dragging their feet. My gynecologist’s office is flabbergasted and never seen this kind of male bullshit privilege from an insurance before. And I call to check on the status and the woman tells me that calling to check is useless because by law they have 72 hours to respond. And, no, I can’t speak to anybody on the appeals team, members aren’t allowed to.
I am off half the medications I rely on to be functional in preparation for surgery and have been for a week. I’m in immense pain, and I should be preparing my house for a six week recovery, and staying calm and relaxed, and instead I am so incredibly stressed out because this is the only really feasible time to do this surgery, we’ve arranged out life around it, scheduled around it, and now there’s a strong chance it won’t happen. My stomach is wrecked, I have no appetite, I feel helpless because the decisions about my care have been taken away from me by a faceless corporation that doesn’t want to hear from me. I barely slept last night and when I did, it was full of nightmares.
For reference:
- During my first period at 12 I passed out from the pain.
- During high school, my 7 day periods regularly soaked through six pads a day.
- During college I had to go on birth control because my cramps prevented me from going to class and my cycles would swing wildly between 15 and 45 days long.
- During grad school, I collapsed in a crosswalk in the middle of Boston from the pain and had to make the decision between taking Lupron for six months or having surgery. Surgery wasn’t an option because of work and class, so Lupron it was. It helped with the pain, but it was also six months of hormonal agony and has left a really nasty imprint on my biological systems. Never again.
- After going off Lupron we learned that estrogen was giving me heart arrhythmias, so I could no longer take birth control with any estrogen in.
- Progesterone only treatments didn’t seem to be effective, so I went onto the Skyla IUD (designed for women who haven’t had children, and lasts for three years).
- Two years into the Skyla, my cramps were so bad I was missing work and they were constant. No letup. I tried to keep it a few more months but ended up having it pulled six months early.
- Went back to progesterone only treatments. The low dose normal birth control pills did nothing.
- 5 mgs was hormonal agony.
- 2.5 is barely tolerable. My last period I bled for a month and a half. And I’ve had cramps daily for the last two months.
And an anonymous man at the other end of my insurance says I don’t have endometriosis. At least, there’s no evidence for it. And I’ve tried nothing to treat it. There is literally NO OTHER TREATMENT LEFT. I do not make this decision lightly, but since I do not want to have biological children due to all of the health concerns in the rest of my body, I choose not to have multiple surgeries to “clean out” my abdomen that will need repeat visits and multiple surgeries. JUST TAKE IT OUT. One and done. Why is this so hard?
I don’t really need comfort, or assurances, I just need to share this. To vent it out into the atmosphere so it stops poisoning me inside. And I’m going to be uncomfortably honest right now, as if I haven’t been already: When talking about this last night with my husband, he saw how upset I was and checked in (rightly so) to make sure i wasn’t going to hurt myself. And as I checked in with myself, I realized the only reason I wasn’t is because I couldn’t think of anything that would help and not just make the situation worse. That’s how far I am at my wit’s end trying to deal with my health. Before you ask, yes, I am seeing a therapist. I have another appointment with him on Monday. He’s a good guy. I have a wonderful team of doctors who are still struggling to get a grasp on most of my malfunction. My primary care doctor, Dr. Nicola Hyde, is probably my favorite doctor ever, and I know I’m one of her favorite patients because I always bring her new and weird things to research. I’m just glad she takes me seriously. At least someone does.
TL;DR Fuck insurances taking away agency of care from patients and doctors. I’m a wreck, and praying to all that is holy that I still manage to get my surgery next week.
Rebecca A. Demarest 