When the Health Care System Works Against You
NOTE: As a white woman, I am going to be focusing on the hardships of white women since I can not speak on the experiences of people of color.
Health care is a system that works for white, cis, men and against women, transgendered patients and people of color. It pushes heteronormative ideas on patients and encourages women to believe that they are too emotional to make their own decisions, that their symptoms are in their head and that physicians know more about their bodies than they do.
One time, I bled for 22 consecutive days. The doctors administered bloodwork and conducted an ultrasound, which came back normal. Without any issues to target, my primary care physician prescribed me a birth control pill. However, this pill gave me a side-effect I could not deal with, so we switched. While on this pill, I experienced what is called “breakthrough bleeding” in which the uterus bypases the pill and starts to bleed anyway, so we switched. On this pill, I experienced breakthrough bleeding for 39 days while taking the pills daily. It was, is, miserable. I have left early from work due to my period pain and even gone to the ER because I was so sure that there was something else going on. Yet, all I heard was, “Everything looks normal, but here’s a painkiller. That will be $145.” I needed answers and started looking for them.
While I was searching for ways to deal with my pain, I was diagnosed with endometriosis at 19. When looking for treatment options, there weren’t many options and the available ones are unfavorable. My doctor recommended a fairly new pill, Orilisa, as a long-term solution that I, at first, was willing to try. My mind changed when the pharmacist told me about all of the complications that the medicine causes and said that Orilisa isn’t approved by the FDA to be taken after two years of use. This medication induces medical menopause, complete with all of its symptoms. I decided to find a doctor who would give me what I wanted. A hysterectomy.
A hysterectomy is a surgery that completely removes the uterus from the pelvic cavity. With this procedure I would no longer experience periods and I also can not get pregnant. Since this procedure’s main use is in sterilization, there is a lot of hesitance from medical providers to operate on a 19-year-old.
My regular OB/GYN referred me to a colleague of hers who has been doing hysterectomies on younger, transgender patients in the Valley. This doctor is a man and although I would usually never go to a male OB/GYN, I trusted my primary OB/GYN and wanted to believe that this surgeon would help me and set up a surgery date. He told me, “You have not done enough for me to feel comfortable with operating.” In essence, he wanted me to try more birth control options even though my primary OB/GYN felt we had gone through all of the choices. He said that I have not tried enough types of birth control, such as shots, IUDs, implants or rings. I explained why I wasn’t comfortable with these options and questioned, “When do I get to exercise patient autonomy?”
According to the Mayo Clinic and Healthline, treatments for endometriosis include pain medication, hormone therapy, conservative surgery and hysterectomies. While one of the more aggressive forms of treatment, a hysterectomy is what I have been requesting for well over a year. I am confident that if a man had been making the same request he wouldn’t have experienced all of the barriers that I have.
The healthcare system is more concerned about preserving my fertility than providing me with treatment that I need. Even after explaining my sexuality and stance on children and motherhood, for some reason, all of my providers are wholly convinced that I will change my mind. This potential future where I have children is preventing me from living a life that is pain-free. Furthermore, the process of having a child, which I have never thought of fondly, is difficult for someone with endometriosis, and, therefore, the treatment plan that is a full hysterectomy does not inhibit the kind of life I can live.
I understand that patients are not doctors, and they do not usually know what they are talking about when they come to their healthcare providers with a Google diagnosis. However, I do understand my body, the pain I’m feeling, what’s normal and what’s unusual. I know what my goals are for my life and how I want to spend it.
Patient autonomy needs to be given to all capable patients, especially when the patient has a body (gender or color) that is different from the standard in medical textbooks (white men). We also need to teach medical providers about people who have goals that differ from the heteronormative, nuclear family picture so that patients like me aren’t barred from getting essential, basic healthcare.
