Dear Doctor: Telling Me "It Could Be Worse" Doesn't Help

My diaphragm started feeling sore a couple of years ago. At its worst, it feels like a severe side stitch, the pain you get when you do something really active. It doesn't bother me too much unless I'm doing something vigorous — like running, which I've done my whole life — but it is tender at all times.  While I know it's probably not life-threatening, it is painful when it happens. But what's more concerning is that it's a symptom I've never had before.

Research shows that extra-pelvic endo can show up on the lungs, diaphragm, gastrointestinal tract, urinary tract, among other places. And this kind of endo may not actually be that rare, it may just go undiagnosed.¹

To find out what was going on, I went to see my OB/GYN to get it checked out.

How my doctor disappointed me

This was only my second visit with my new doctor. (I moved recently.) The first went remarkably well. She validated my pain, sent me to a really good pelvic floor specialist, and seemed interested in helping me. But things took a turn when I told her, again, that I wasn't interested in taking Lupron or Orlissa for my symptoms. (She'd pushed these on my first visit, along with a very cavalier mention of a hysterectomy.) If I took those meds and the side pain went away, we'd know it was hormone-related, she told me. If not, then it's probably something different.

But I wasn't interested in dealing with harsh side effects like hot flashes, night sweats, or suicidal thoughts (I have a history of depression). Not just "to see" if they would help.

After about 5 minutes of conversation, it became clear that she was confused (and frustrated) that I was even asking her about my upper abdomen cramps. When I said I have a lot of fatigue and digestion issues, she said: "This sounds like a GI problem". When I told her, "Research shows endometriosis often affects extra-pelvic organs", she seemed pretty annoyed.

I should be thankful I don't feel worse, apparently

When I pushed her about getting a scan to see if we could check for misplaced tissue on my organs, she was very dismissive. She added that if I had a blockage, I would know it. And if I'm not throwing up blood, whatever is going on is probably NBD. Then she went on to tell me how serious surgeries are — like I hadn't already had two — and how I should be thankful I don't need a bowel resection. Now that's a serious problem, she told me.

It really seemed like she wanted me to be grateful for my low-level chronic pain and exhaustion. And believe me, I know things could be worse. But knowing that doesn't make my body feel any better. That's not how brains work.

It wasn't what she said, it was how she said it

I consider myself a strong patient advocate. But the whole thing felt surreal. And I started getting choked up and panicky. I couldn't bring myself to condemn her attitude. I just wanted to get out of there.

And while she may very well be right — perhaps there's something wrong with my gallbladder and a GI doctor can help — she left me feeling humiliated that I'd even come in. My chronic illness buddy, who has ulcerative colitis, sympathized. In her experience, doctors only care about big problems.

Hopefully, my GI doctor will be a bit more sympathetic. If not, I'll be finding someone new.