When I learned that I would need a hysterectomy at age 47, I anticipated bumps in the road — but only of the medical sort. I didn’t foresee the ways in which institutional issues would complicate my recovery.
I’m a lesbian in a 15-plus year relationship with another woman. We have no children by design. I have two forms of health insurance: a Highmark plan through my partner’s employer and a basic Medicare plan as part of my disability status. We have a car, the capacity to take paid time off [PTO], family support and other resources that should have kept this pretty smooth.
I had my surgery on a Wednesday in early January. I went home the next morning and began my recovery under the watchful eye of my partner. She had taken six days of PTO to be with me and put her boss on notice that more may be required if I experienced complications. That didn’t happen, thankfully, although I did end up in the emergency room one time during my recovery for a minor issue. Our fridge was stocked with easy-to-prepare meals, and she went back to work.
I joined email groups, a website called HysterSisters and opened countless dialogues with my friends about reproductive health to find information, support and more information.
The biggest barrier for me has been navigating the healthcare and insurance systems. Even though my surgeon was employed by the Allegheny Health Network since September 2017, he was not in the approved providers list on the Highmark side of things by December 2017, when I was attempting to schedule my surgery. Add in the complication that my current primary care provider is a UPMC doctor and even the simple task of getting blood work faxed back and forth was exhausting. I lost days and weeks because of the omnipresent UPMC-AHN battle, but also the internal walls between AHN providers and Highmark insurance.
Another problem has been coordinating my mental health care with my physical health care. My existing therapist left the Persad Center, so I had to start with a brand new counselor in January. I was really counting on my psychiatrist for continuity of care. But Allegheny Health Network doesn’t seem to appreciate the mental health toll of medical procedures, recovery and the like.
My surgeon was decently versed in mental health matters, but he repeatedly insisted that there would be no intersection. He was wrong. Not only was I cooped up in the house for weeks, it was January 2018, the heart of a a terrible winter that made even small attempts to break free daunting.
No one, apparently, reimburses gynecological surgeons to talk with other healthcare providers like psychiatrists. And my surgeon didn’t plan for the traumatic impact of the surgery on a survivor of sexual assault. No one did. I had no active therapist who perhaps might have caught that. The surgeon’s office had no social worker or nurse doing post-surgical follow-up to catch this.
I’m fortunate that even as my struggles with depression and anxiety post-surgery were hard, I was able to trust my intuition about the trauma connection. I requested a therapist transfer to someone experienced with trauma therapies. But given all the intersections of health care, privilege, resources and knowledge at my table, I shouldn’t have been on my own to make that call.
What happens to those who lack any of those resources?
I anticipated the costs of the surgery would be a challenge. We have a $1,800 deductible and because my surgeon delayed my surgery and I had to stay in the hospital overnight, I met my deductible for 2018. But as of mid-July, I still haven’t been billed. The delay is because once Highmark approves their end of things, it goes to Medicare, which doesn’t always even approve all hysterectomies. No one can tell me where my billing is within this system, so I have no idea when or if we’ll be hit with an $1,800 bill. That’s not comforting or efficient.
I can list a thousand ways in which I came through this experience well — a supportive partner, not having to return to an external work environment, not having to deal with pants (and waistbands/belts), not having to worry about meeting the needs of children, not worrying about having to use up my PTO and vacation days to squeeze a few more recovery days into my schedule, a relatively straightforward procedure, no evidence of cancer, not being pressured into sexual activity to satisfy someone else, etc. I am grateful for all of these things and more.
But things should be better in a world-class healthcare city.
Gynecologists should have nursing or social work staff doing follow-up with patients over the phone, including screenings for depression and anxiety. Multiple follow-ups, not just five days after surgery and at the follow-up appointment 60 days later. Gynecologists should ask about sexual trauma histories and incorporate best practices into what is an invasive and potentially triggering procedure.
Insurance providers should allow for treatment teams to communicate prior to and after a major invasive procedure, even if they are in different healthcare networks.
I am grateful I had the surgical option. Many of my friends face greater challenges, typically because of insurance barriers delaying their surgery. I feel much better physically. But what’s still taking a toll on me mentally is wondering how others with little to no safety net are getting through this. They deserve better.