Chapter 25: What's that?

In addition to having endo, I also have a chronic hive condition called autoimmune progesterone dermatitis, which is a chronic hives condition that flares up during the last 2 weeks of my cycle. Like PMS and a period with endo isn't bad enough, let's add hives and swollen joints to the mix.

Luckily for me, it doesn't happen every cycle. It started when I was in elementary school and we never figured out a pattern until I was 26 years old. Basically, my flare ups last about a year to a year and a half. When I'm in the middle of a flare up, I'm a human hive. Nothing except the strongest anti-histamines and steroids will touch them. I end up in the ER on an IV a few times when the hives move to my mouth, throat and eyelids. Then, they just go away for 5-8 years. The last flare up happened during my last two semesters of law school and while I was studying for the bar exam, which means that it was way too easy for doctors to dismiss it as stress. I finally found the right combo of things to work for me- great primary doctor, awesome allergy doctor, acupuncture and constant pharmaceutical maintenance (one Allegra and one ranitidine at bedtime, even when I'm not in a flare up. Add same dose in the morning if hives appear. If they don't go away, call doctors for steroids and Hydroxyzine, carry Epi-Pen).

Then what happened? My allergy doctor retired. Of course. I've continued to go to her practice and have bounced around with different PAs since then. They've all been fine, but I also wasn't in the middle of active flare ups when I saw them. Yesterday I had my yearly appointment with a new PA (via telemedicine due to the pandemic). The PA was in her 20s or 30s and was very nice and thorough on the allergy front (I also have very real allergies on top of the chronic hive condition). Then we got to the part about recent medical procedures. I told her I had excision surgery for endometriosis in October. Her exact response: "What's that?"

.. I then explained to her what endo was and what the surgery entailed. Her response? "That sounds painful." No shit. Really? Endo is not rare. Medical professionals should know about it. I resent having to pay a copay to educate people on something that they should know. Allergy docs should be especially aware of endo because there could be some relationship between endometriosis and autoimmune diseases, including APD. To her credit, she took notes as I was teaching her and promised to look it up. But she should have known it to begin with.

I had a moment after we hung up where I realized how frequently I'll have to be doing this for the rest of my life. If PAs and doctors don't know about it, how do people get diagnosed? They don't. It takes 8-10 years on average for women to get diagnosed with endo. It's unacceptable but this is precisely why it happens. How do we fix this? I wish I had more ideas, but it seems like there's only so much one person can do.