Be Your Own Health Advocate

Reading the articles, stories, and comments on Endometriosis.net drives home the fact that many women who suffer with endometriosis struggle for years to get a diagnosis. Doctors dismiss our symptoms and tell us to stop whining. Maybe not in so many words, but that is basically what it boils down to. You’re a woman, you get periods, deal with it.

The shortfalls of medical education

Even when we have received our diagnosis, doctors still don’t seem to be able to offer proper care. Sadly, this is partly because the sex education provided to medical students is woefully lacking. Most doctors can’t recognize the symptoms of endometriosis if it slapped them in the face (and in most cases, these symptoms are so obvious, the doctor is the only one who doesn’t think endometriosis).

These stories are depressing enough to make you just want to give up. Of course, awareness of endometriosis is getting better, with celebrities speaking out about their struggle with the illness, and organizations such as Health Union spreading as much information as possible, but it often seems that this awareness hasn’t reached the medical practice yet.

We must take control

Which is why we need to become our own health advocates. Yes, we expect doctors to be able to know and recognize the symptoms of our disease and be able to provide care for us. But we have already seen that this doesn’t happen, and doesn’t seem likely to change anytime soon. So we ourselves need to go into each doctor’s appointment as prepared as we can.

When I went to my doctor to ask for a hysterectomy,  I expected it to be an uphill battle. I knew there was an endometriosis clinic in the next town over, but I fully expected my doctor to send me to the local hospital to see the general gynecologist. I researched my rights and whether I could request a referral to the endometriosis clinic directly (I could). Armed with as much information as possible, I saw my doctor. Sure enough, he insisted he needed to send me to the local gynecologist first and that this specialist would have to make the call as to whether to send me to the endometriosis clinic. He wondered aloud whether I even had endometriosis, despite my medical records showing I had had surgery for it in the past. I kept calm and insisted he could refer me. When he saw I wasn’t going to take no for an answer, he capitulated and referred me and a few months later I was seen by the endometriosis specialist.

Know your rights

Doctors often seem to only care about their paycheck and not about the health of their patients. Make sure you arm yourself for battle with as much information as you can. Know your rights. Ask to see another doctor if your current one doesn’t take you seriously. Stand firm and advocate for your own health. It’s not always easy or pleasant, but in the end, you will get the treatment you deserve and that’s worth any battle.