Why we need awareness

I was speaking with a health care professional last night. This is a woman I know, yet she is oblivious to the world of endometriosis.

I was retelling her an actual endometriosis patient story that was once e-mailed to me. This woman was in her very early 20’s. She had no children and was not in a serious relationship. After a laparoscopy, she diagnosed with Stage IV and advised to have a complete hysterectomy. She was advised to abstain from hormone replacement.

Two week post-op, this patient was admitted to the psychiatric ward, full-blown hysterics, and suicidal. Two weeks prior, she had been a happy and productive person. She held down a job, despite her illness. And even maintained solid friendships. She was in no way an isolated person. Yet, post-op, she began to retreat more and more as menopausal symptoms emerged. Her hot flashes turned into insomnia. She no longer ate at decent times… and that turned into not at all.

After the standard 72 hour hold, she was placed on antidepressants and estrogen. When she contacted me, it had been 4 years post-op. She was still taking antidepressants. She could no longer hold down a full-time job and worked now only part-time. Because of this she had to move back in with her parents, a move that took her 2 states away from her network of friends.

Despite the staging of her endometriosis, at the time of laparoscopy, her symptoms were rather mild. She reported mild pain the day before her period (4 out of 10), 8 of 10 during her cycle, and bloating after. Over the counter medication had been sufficient and work loss was minimal. She only had the laparoscopy because her cousin had similar symptoms but was having trouble conceiving. Her cousin’s endometriosis was mild (the patient couldn’t recall but believed it was Stage II), and was treated with laparoscopic removal. Fearing difficulty having children down the road, this woman decided to take pre-emptive measures.

After telling this story, silence followed on the phone line. Had I lost her, I wondered. Just when I was about to check my connection, a shocked voice says, “I had no idea hysterectomy isn’t a cure for endometriosis.” This is a front line health care worker.

How can we expect patients to know this when there are health care workers still oblivious?

This, my endo sisters, is why we need more awareness. We need the correct awareness. The peer-reviewed research. The search for the truth.

And speaking of awareness and finding the truth, I urge you to read the post on yellow washing over at Chronichealing.com.

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3 responses to “Why we need awareness

  1. Endochick,

    Tragically, if I had a nickel for every story I have heard over the years that is in the same vein as what happened to the woman you described (the one who had the hysterectomy), I’d have quite a nickel collection! 😦 (I don’t want a nickel collection garnered that way)!

    It boggles my mind how many health care professionals remain uneducated about such basics as “there is no cure for endometriosis”. It makes me sad, angry, frustrated… and motivated to spread the facts about endometriosis!

    Thank you for sharing this important post AND for sharing such information with the health care professionals you meet through work and grad school. Hearing about these stories through you, someone they know and someone who has endometriosis herself, might make more of an impact on them than if they read the same information in a book.

    Sometimes, hearing info from a real, live human being we know helps it sink in more.

    Clearly medical schools STILL have plenty of room for improvement in what they are training health care professionals about endometriosis!

    Jeanne

    P.S. Thanks for the shout out about yellow-washing.

  2. Thanks for sharing this! You inspired me to share my story because I have heard so many stories like the girl above and it makes me sick.

  3. Such a great example of why we need awareness.

    Her story is heartbreaking. And it is way too common. I can’t wrap my head around the way endometriosis is overlooked, unknown, misunderstood…especially in the medical community.

    Thanks for sharing this story.

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