A lot of women in the endometriosis community, especially those who live with chronic pain, talk about how managing their disease is a "full-time job." I couldn't agree more. For the past three years, while my disease symptoms have been most acute and I've gone through surgery, I've been lucky enough to not be working. (Yes, I know, I "work at home" as a stay at home mom. But it's just not the same thing as going to an office every day. For me.) I cannot imagine not having the space and time to heal and adapt and cope. I need time to focus on my body, my disease, and all the things that go into getting through the day.
And, I need the time to work with my doctors. This is something that I am actually really great at avoiding, because it is such a nightmare. This is the part of managing my disease that stresses me out, drains me, and triggers me. There are too many layers, too much history, and frankly, too many doctors.
Here's a list of all of the doctors I need to help me manage my endometriosis*:
- Primary Care Physician (This seems relatively irrelevant at this point, but right now mine is managing all of my prescriptions. God bless her.)
- Gynecologist (Who understands endometriosis, chronic pain, menopause, pelvic floor disorder. Basically, this person is a unicorn. If you have one that does all of this, please contact me immediately.)
- Endometriosis Surgeon
- Colorectal Surgeon (There's endo ALL over my bowels. This surgeon was just as critical as my endo surgeon.)
- Uro-gynecologist (Interstitial Cystitis)
- Gastroenterologist (Celiac Disease)
- Nutritionist (See all of the above.)
- Social Worker/Therapist (Feelings much?)
- Psychiatrist (To prescribe and manage meds.)
- Pelvic Floor Therapist (Vagina therapy!)
- Pain Management Specialist
- Body Work, ie. acupuncture and massage
Are you having a panic attack just looking at this list? Because, I am.
Note that I said "I need," not "I have." Right now I have a PCP, a suite of surgeons, and a boat load of therapists. As for the rest, I am in the process of identifying someone who can work with me or finding the time to see another doctor or therapist. For the most part doctors are not willing to admit that they don't truly understand endometriosis, how it affects my body, and how to treat it. This leaves me in the position of essentially interviewing them to be my doctors. The one who said "Yes, any gynecologist at our practice can treat endo." was immediately crossed off the list. She doesn't get it. The entire process is mentally and emotionally exhausting. And, after years of being ignored, belittled, dismissed, misdiagnosed, and mis-treated by doctors, I have some very real PTSD surrounding interactions with medical professionals.
So, why aren't there Centers for Endometriosis which consolidate all of these medical professionals in one place so they can provide comprehensive, coordinated care for women? (Rhetorical question! Ha ha!) If endometriosis affects an estimated 1 in 10 women (citation), there are a shit load of women out there who are struggling every day to find good doctors to address all of their medical needs. This is a lot of burden on a lot of people. This is really unacceptable.
I was talking with my dear friend and endo-inspiration, Casey Berna, about this, and she was *on* it. (Duh.) She's talking with physicians in her area about expanding their practices to look more like a comprehensive care model. We talked about how these centers need to look and function like the big cancer centers around the country. While endo is clearly a very different disease, the way it impacts patients physically and emotionally is very, very similar and many patients need a similar care model.**
Maybe this is another opportunity for many of us to put on our advocacy pants and start questioning our doctors and speaking out about what we need in our care. My endo surgeon, who is a spectacular surgeon, works completely independently. Meaning, she has an office with a desk and an exam table. No nurse, no blood work, no ultrasounds, no social worker. I went out of office for everything, which meant that I was dealing with five additional doctors offices, and the related insurance bullshit, for one surgery. We can do better. They can do better.
*Everyone's list will look different, as our disease and pain can affect multiple organs and manifest in different ways. Also, because most doctors don't really understand endo, we often have to reach for those who work with other diseases (most often in the cancer community) to see if they can work with us.
**This also all needs to be covered by insurance. Which right now, it definitely is not. But that's a whole other blog post.