Face Making

Artist Gwenn Seemel’s bilingual blog about art, portraiture, free culture, and feminism.

How I’ve treated my endometriosis: navigating the doctor’s ego

2017 . 07 . 12 - Comments / Commentaires (5)

Her confidence calmed me. Plus, she was making a lot of sense. She reminded me that twice now I’d ended up on the operating table, so I would almost certainly be able to feel when my body needed another surgery.

As first meetings with gynecologists go, this was a good one. The doctor was recommending that I listen to my body, which far too few medical practitioners will do. She told me the Mirena Coil didn’t always regulate endometriosis immediately. This was why I’d had my second surgery seventeen months after putting it in: the Mirena hadn’t had the chance to calm things down inside me at that point. The gynecologist didn’t see a need for an ultrasound even though it had been a year since anyone had measured the size of the cyst on my remaining ovary—even though it had been almost four since my last operation.

I left the doctor’s office that day in 2016 feeling alright. Happy even.

When I left there a few weeks ago, the mood had shifted. This time, the gynecologist’s confidence disgusted me.

She didn’t remember seeing me last year, clearly not bothering to review her notes before inserting her fingers into my vagina and jabbing at my lonely ovary with more vigor than necessary.

“Ouch!”

But she didn’t even look up, much less ask why I’d cried out. I wish I were making that up. I wish she’d been a human being. Instead, she informed me that the Mirena is not a treatment for endometriosis and asked me who had prescribed it, as if she wanted to give that doctor a piece of her mind. Lips closed, eyes serious, head slightly tilted, her smile was calculated to convey that she knew more things than other people did.

As second meetings with gynecologists go, this was still better than average for a patient with endometriosis. And I hated the doctor for it. I hated all other medical practitioners as well. But I was feeling the feeling. For months now, the bloating and the pain mirrored what had happened in 2009 and 2012 before each of my surgeries.

So I let her be less-than-human and I let her have her smile, because I needed her to okay an ultrasound. Did she know I was using her? Could she tell that I thought she was a colossal jerk? Would she care if she did?



ultrasound

This is what an ultrasound looks like when you’re having an endometrial cyst and not a baby. In this case, it represents very good news. The cyst appears to have actually shrunk. If I allow a margin of error to account for having a different technician taking measurements—ultrasounds are a bit subjective—I can still feel certain that the cyst has not grown.

It’s hard for me to convey the magnificent relief I feel on determining that this is the case. Physical pain reacts to emotional health and, with the knowledge that I don’t have a hospital visit in my near future, my body already feels loads better.

While all that is truly wonderful—the sort of news that gets the unicorns dancing—it’s also not the reason for this article. The doctor’s ego is. And did she ever show me more of it! Because I didn’t get this relief until I arrived home and compared past results with current ones. Because my gynecologist had not only not looked at my records before doing the post-ultrasound consultation, but she refused to tell me the dimensions of the cyst, answering vaguely that my ovary plus endometrioma measured four centimeters in all. I had to request a printout of the ultrasound in order to get the precise size.

Confused by the gynecologist’s fuzzy responses, I nevertheless continued asking questions. Or, rather, I tried to. Because that’s the thing about this doctor: she is the interruptinator. She cut my partner off repeatedly as well, a fact that I found both comforting and aggravating. He had come along so that I could have a second brain working on the problem with me, but he could barely get a thought out before the doctor’s voice trampled all over his. Though he didn’t manage to get any more useful information out of the her than I did, I was still glad he was there. As a witness.

He watched the gynecologist explain my disease to me as if I’d just been diagnosed yesterday. He listened as she told me that the pain can be overwhelming. He marveled as she actually said that endometriosis patients can be pretty “messed up” from the physical agony of the illness.

Messed up.

This time, I was the interruptinator: “do you see how calling endo patients ‘messed up’ when speaking to me could make me uncomfortable?” She insisted I’d misunderstood, but she didn’t do a good job of explaining what she really meant.

So here’s my diagnosis for her. She is not actually confident. She knows she has to be in order to do the work of a doctor. She understands that patients need the white coat to communicate authority. We want to believe her, because we want her to be able to help us. But until she can learn to let us say what we have to say and make us feel like she’s listening, we aren’t going to trust her.

Instead, we’ll use her to okay ultrasounds, and then we’ll blog about her incompetence so that other endometriosis patients don’t get “messed up” by putting up with the incompetence of their doctors.

For more information about treatments I’ve used, check out these articles about:

- using the Pill.
- using the Mirena Coil.
- focusing on Chinese medicine.
- going gluten-free.
- overhauling my whole approach to eating.
- using physical therapy and squatting.
- taking care.


RELATED ARTICLES:
- Daily rituals / Rituels quotidiens
- From childless to childfree / De sans enfant à childfree
- Can you trust your gynecologist to treat your endometriosis?


CATEGORIES: - English - Endometriosis - Philosophy - Reviews -


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(5) Comments / Commentaires: How I’ve treated my endometriosis: navigating the doctor’s ego

-- Claire -- 2017 . 07 . 13 --

You are not alone! This reminds me of an interview I recently heard with Alan Alda, who, after a traumatic instance of miscommunication with a medical professional, went on to write a book:
http://www.npr.org/sections/health-shots/2017/06/04/531271710/alan-aldas-experiment-helping-scientists-learn-to-talk-to-the-rest-of-us

I haven’t read the book, but the interview was great!

In other news, I am SO HAPPY to read about the shrinking cyst! Hooray!!!! :-D

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-- Claire -- 2017 . 07 . 13 --

... caveat: the actor’s bad experience ended up not being as bad as all that. I don’t mean to put your experience on par with his, as yours was truly horrible! (“Messed up”?? ...seriously??? What was she thinking??!!!)

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-- Gwenn -- 2017 . 07 . 13 --

This book is so important, especially right now. And I’m glad it’s a “Hollywood-type” who wrote it, because people might listen to him BECAUSE he’s got that movie star authority. I really want to read it!

And, Klerbin, I didn’t think you were comparing, but you’re kind to think of it! Besides, his story is pretty atrocious, especially since it impacted the way he looks and, as a result, his job. But even without that, a doctor who yells at you when you ask a question should be sent to bed without any supper and told to reflect on the magnitude of their sins. Disgusting!

If you’re looking for other radio interviews on the topic, Radiolab’s white coat episode is fascinating.

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-- Michelle Casserley -- 2017 . 07 . 13 --

Oh that sucks! Sorry you had this experience xxx
I have also had a some of these experiences with long term auto immune challenges with my journey with Hashimoto’s hypothyroidism, fighting to get different tests and different medication.
When I was very unwell and seeking answers I was labelled “just anxious” and that I “needed to learn to relax” very frustrating and had left me feeling a bit like you now, doing what I need to do to get the tests I want/need etc. Wary

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-- Gwenn -- 2017 . 07 . 14 --

I’ve never had this bad of a doctor before and for that I am grateful. The stories I hear—from you, Michelle, as well as from other chronically ill patients—make me so angry and so thankful that I’ve been able to avoid dealing with this sort of thing for so long! Bon courage in your healing journey!

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