Doc Shopping, or, Finding Katie’s Breaking Point

Today, I’m stepping back on my soapbox: endometriosis and the saga of finding the right doctor. Over the last year I’ve contacted and visited a half dozen clinics in the Portland area. I have been rebuffed from all of them, with different versions of the same reply.

We don’t do pain management.

Every time I’m told this, it hits me harder. I’m continually told I need to find a pain management specialist, that I will need to sign a contract about my usage of the drug, and I’ll have to go to the clinic monthly to pick up my prescription. You know, because I’m an addict.

The analogy I’ve used when searching for the right doctor is searching for a unicorn. A women’s physician who isn’t obsessed with babies? I reached out from Portland proper, and eventually visited a clinic in Salem (locals know I must be desperate if I went to Salem).

I was on the verge of declaring this visit another bust, because she told me she wouldn’t do pain management.  But she didn’t leave it there. She said she wants to end it. “Have you thought about a hysterectomy?”

I was totally thrown off balance. A few words stumbled from my mouth before I could say “I knew I wouldn’t find a doctor willing to do it for me.”

“You’re looking at her.”

angry_unicornI found my unicorn. I burst into tears. She told me that insurance wouldn’t want to pay for it, but if I could put together the money, she’d do it. This was an unexpected relief for me. I prepared to battle insurance for coverage, because mine seems to only care about women if they are or will be pregnant.

When I finally worked up the nerve to wade through the website and phone trees to clarify specific benefits, I was surprised to learn a hysterectomy is covered, pending a few consent forms. The end is in sight! I’ve spent more than half my life in pain, and had been mentally preparing to hurt for many more years. Imagine my joy!

Imagine then my sadness at learning that my unicorn does not play with my insurance. Sad, yes. Surprised…not remotely. I had to return to the Provider Directory. This is not a shucks, back to the drawing board turn of events. This is Alice falling back into the rabbit hole abyss. Almost like returning to Salem.

I’ve been in this cuckoo’s nest before, so I knew a few things. Some of the listings would be out of date. Some would actually not be taking patients at this time. Many listings would direct me to the Center for Women’s Health at OHSU (which I have explored before, but you’ll hear that later). Indeed, 4 physicians at OHSU came up meeting my search terms. The first thing I noticed was that 1 of them was listed 4 times.

confusion1

This does not bode well.

Have you ever felt like a pinball before?

Phone number 1: “Hello, this is general cardiology.”

confusion3Phone number 2: “Hello, this is digestive health department.”

confusion2Phone number 3: “You’ve reached the toll free number for the Child Development Clinic at…”

whatitmeanPhone number 4: “You’ve reached the general information line for OHSU, for questions about…”

confusion4I tried a different strategy, and looked up that doctor in the hospital directory and found (naturally) another number.

Phone number 5: “Hello, this is the genetics clinic.”

confusion5This number makes sense, because she specializes in genetics. Evidently that’s related enough to pregnant women to list her as an OB.

But there are three other doctors, right? Right?

confusion6Act 2: calling the Center for Women’s Health, to ask about the remaining three practitioners.

Just for fun, I asked about Dr. #1. Naturally, “We’ve got no doctor by that name.”

confused 7Physicians 2 and 3 are legit. She knows their names, in fact they are fellows of the clinic. Good for them, bad for me. My insurance will only pay for me to see the residents of the clinic, which means I may see a different doctor at any time, and they don’t do pain management.

A half-hearted Hail Mary, I asked about the 4th doctor. She explained that #4 is also a fellow, and works from the fertility clinic. I could see that physician, if I see a resident and they are willing to refer me (and if I can get over the insult of going to a fertility clinic for a hysterectomy).

(I can’t.)

And before you pull a Green Eggs and Ham and say “Just go try a resident there, don’t be so picky,” I’ll leave you with the following moment, from the time I gambled exactly that.

With a wavering voice, I gave her a sketch of my story. Always had painful periods. Have pain without periods. Tried every daily birth control. Have had two surgeries, need a doctor for the next. With a straight face, she said

“Have you tried ibuprofen?”

…stunned… “You mean breath mints?”

“You know, like, a lot of it.”

abomb

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