What I Wish I Could Tell Doctors About My Endometriosis

Living with endometriosis means engaging with a myriad of doctors, some good, some bad. As a patient, I met countless health professionals even before I was diagnosed. After my diagnosis, I had to navigate the medical system, join waiting lists, and repeatedly ask to be referred to a specialist. I was patronized, one doctor even told me to give up. I became anxious every single time I walked into a hospital. Then, after finally finding a wonderful surgeon and having one very successful procedure, I discover he is retiring this year.

I am dreading going through the referral process all over again. Will my new doctor be supportive? Will they listen to my long list of symptoms? It may sound as wishful thinking, but every time I meet a new doctor, I wish I could them the following:

I feel like I am losing my mind, but I haven’t lost it

I am in constant pain. Sometimes it feels like someone is stabbing me with a knife, or scraping a rake down my uterus. But please don't prescribe me more painkillers, because I developed digestive issues from taking so many. PMS used to have me craving chocolate and sweet things, now I am dealing with very dark thoughts and an inability to think straight. Is there anything you can give me to stop these thoughts? Will you judge me if I tell you how many times I’ve thought about disappearing completely?

Also, I am sure it’s not "just stress".

Please don’t ask me about having children... again

I know you have to, because treatment for endometriosis is mostly aimed at fixing infertility issues. Yet, every single health professional I will meet asks me the same question, and right now all I want to do is be able to function like everyone else. The heartbreaking truth is that I don’t want to drag a child into this misery, and getting pregnant is that one thing I'm not sure I can even do.

Don’t tell me babies will cure my endometriosis

It’s not true. Having a baby will only put my symptoms on hold. There is no guarantee they will not come back after I finish breastfeeding. Stop treating a human life like it’s some form of treatment. Please read up on this illness before dispensing inaccurate advice.

I'm sorry if I sound like I’m telling you how to do your job

Endometriosis should not be a mystery to you, it really isn't a rare disease. It affects 1 in 10 women worldwide. It ruins relationships and careers, putting women and men through the wringer. Endometriosis can destroy personal dreams. I know I am not a doctor, I’m just another patient. But, sometimes, it feels like no one is fighting for our us other than loving partners, friends, and relatives. We need so much more. We need research and effective treatments. Medical leaves are not enough, nor are hormonal treatments and their upsetting side effects.

We need a solution, and we depend on people like you to find it.