Something is Wrong.
I don’t know what would fix this broken system we have, I just know that it’s broken. When a woman with chronic pain is told there is no cure for her ailment but there’s a way to get relief, and then she cannot access said relief, something is wrong.
Like many others, my adolescence was plagued by severe menstrual cramps. Unfortunately for me, this was accompanied by irregular and unpredictable periods that resulted in many awkward and unpleasant situations. At first this seemed normal, but by the time I was in college and everyone around me seemed to have theirs under control, I started to wonder if there was a reason.
At age 21, soon after graduating college, my menstrual cramps became debilitating. Doubled over in pain and unable to stand up, I’d get sent home from work. My roommates would lie with me and stroke my hair or rub my back as I cuddled up with a heating pad and cried myself to sleep. No, this was not normal.
One particularly painful afternoon landed me in the ER, concerned I’d ruptured a cyst — the only possible explanation for such agony. But when my ultrasound appeared clean, I was sent on my way. I quickly found a gynecologist, who performed routine exams and an ultrasound of her own. Nothing. I had ordered an IUD from her because contraceptive pills made me ill, but I knew birth control could help manage my pain while we continued exploring possible explanations. She assured me she’d help me get to the bottom of this, and I felt it was too good to be true. It was. I called regularly for months, asking for updates on where the IUD was, and after almost a year they told me they’d never filed the paperwork. They lost it.
Onto the next gyno. At this point, it had been over a year of pain, and I felt no closer to a solution. And then I met an angel. This doctor was perfect. I told her about my struggles with getting proper care, and she mirrored my disgust. She told me about her own experiences with IUDs and encouraged me to try ordering one again. I immediately did. I told her I’d suspected my pain was the result of endometriosis (a condition that can only be concretely diagnosed through surgery), and she said, “Maybe. But I don’t really care what’s causing your pain. As long as it’s not urgent, I’d rather worry about managing your symptoms.” I loved her. She sent me to get another ultrasound since it had been almost a year. It would probably be clean, but we might as well check.
A few weeks later, Dr. Angel called. My ultrasound was not clean. They found adenomyosis. A similar condition to what I’d suspected I had, adenomyosis is when the endometrial tissue that lines the uterus also grows within the uterine walls. When the inner lining sheds each month, so does the tissue growing within the walls. Now that explains the pain. She told me there’s no cure for adenomyosis. Most people don’t get it until they’ve had children, and it’s usually correlated with C-sections. When one reaches menopause, the tissue stops shedding and symptoms usually fade. For those who are years away, the only sure way to rid yourself of the condition is hysterectomy. Yup, that’s right. Hysterectomy. A pretty terrifying word to hear as a 22-year-old. But, she assured me, there are many methods for managing the symptoms, and as long as we can keep my pain under control, there’s no reason to think about that. The holy IUD shall save us all.
Speaking of her, where was she? It had been a while, and I hadn’t received word if she was ready to go. A few weeks later, due to… haha ya know, the pandemic, I had to switch insurance plans. I knew Dr. Angel didn’t accept my new plan, but I would pay out of pocket for my one visit per year with her if it meant hundreds less monthly. Cheaper overall, and I could still see my favorite doctor. Seems like the best plan, right?
Yeah, ok, you caught me. It was not the best plan. Another month of playing phone tag with the pharmacy that was ordering the IUD and the doctor’s office led me to find that my insurance plan would not allow the office to use a third party to order the prescription, and the office itself could not order it for me since they do not accept my insurance. So…I should find a new doctor and start over. Oh.
A year and a half later, I find myself back at square one. I am now communicating directly with Dr. Angel, who is helping me figure out if there’s any way we can make this work. Fingers crossed. Regardless of what happens next, there’s no doubt that this process has been significantly more difficult than it should’ve been. After an experience like this, I can’t help but harbor extreme anger and resentment towards our healthcare system. When I have to see three separate doctors to receive helpful information, spend exorbitant amounts of money on the same tests and scans, and am finally diagnosed with a condition but cannot receive the prescription that will control it, something is wrong. I don’t know what the answer is or what steps should be taken to guarantee that people can get the care they need, but I know change must happen.
If you have struggled with getting a diagnosis when you know something is wrong, getting the medication you need, or accessing the doctors you need, you are not alone. I am here for you. I see you, and I love you. We will figure this out.
