Title: Ask Me About My Uterus: A Quest to Make Doctors Believe In Women’s Pain

Author: Abby Norman

Genre: Memoir

Published: 2018

Rating: ⭐⭐⭐

I don’t often (ok, ever) write single-post reviews about books I’ve read. I read far too many books to be able to do that. I usually just write mini-reviews and lump a month’s worth together, such as here, here, and here. But given the nature of this particular book, I feel compelled to write more than can fit in a mini-review.

This was a release-day buy. It popped up in my inbox in a Goodreads newsletter about books being released in March. A book about endometriosis awareness during Endometriosis Awareness Month? Yes, please!

I had such high hopes for this book. Alas, as you can probably tell based on my three-star rating, it fell short of what it could have been.

Review

This book ended up being much more of an author memoir than I really expected, which was fine. About a total of half of the book consisted of the author explaining her horrible childhood. Which was really horrible, don’t get me wrong. She went through some truly awful things. The fact that she made it through is a testament to her resourcefulness, intelligence, strength, and endurance. But it was only somewhat relevant to the rest of the book; far less detail would have sufficed.

Another quarter of the book consisted of well-researched historical details about the history of women’s pain and how it has been “treated” throughout time. This was the book’s strength, in my opinion. There were in-depth discussions about how “hysteria” has been viewed and treated through the years.

The remainder of the book involved the author’s endometriosis diagnosis and the major health problems she faced as a result of her endometriosis. I found it especially relevant that no doctor seemed to believe her when she said she was experiencing dyspareunia (painful sex) until she brought her boyfriend with her to appointments to corroborate. I also especially appreciated this statement:

”Conditions that seem to lurk unnoticed in a woman’s body go unnoticed by others because, for one thing, they are an assumed part of womanhood, and, for another, women are taught to keep those pains private. I’ve often found it curious that when a woman is suffering, her competence is questioned, but when a man is suffering, he’s humanized. It’s a gender stereotype that hurts both men and women, though it lends itself to the question of why there is a proclivity in health care, and in society, to deny female pain.”

Now, this is all well and good, but when she tried to tie the historical facts of women’s pain in with the details of her own life, it came across in many circumstances as non sequitur. Additionally, the chapters were so long that by the time she would get to the end of the chapter and refer back to the topic at the start of the chapter, I’d have completely forgotten what the point was.

Finally, while she generally did a good job of explaining the current knowledge of endometriosis, she fell completely short in discussing adequate treatment, which is excision surgery. Because she didn’t have the surgery, she barely made mention of it. I find it very hard to believe that in her almost exhaustive research, she didn’t seem to realize the importance of excision. And as a patient who has benefitted greatly from excision, that irked me immensely.

A Detailed Analysis

I have been an endometriosis patient since I was diagnosed in 2014, although my symptoms initially presented in 1999-2000. You can read the basics of my story here, here, and here. (It’s a three-part series.) Being a healthcare professional, as soon as I was diagnosed, I started doing research into endometriosis, since it’s not something that any woman is ever taught about growing up. It only took six weeks after my first surgery for my symptoms to come roaring back worse than they had been before the surgery. I knew there had to be a better treatment option out there. I stumbled across excision surgery and knew it was the answer I had been looking for.

Here’s where my biggest problem with this book comes into play. I nearly threw the book across the room upon reading the following:

“Not every patient has access to excision surgery. I, for one, was never offered it, and it was only through discussions with other patients that I learned about it. I also learned that the surgeons who did it had very long wait lists and didn’t take my insurance. If excision surgery is, as a matter of scientific fact, curative, what does it matter to me if I can’t access it?”

The author spent a tremendous amount of time doing her own research, looking for answers. She was told about excision by other people, as is the case for most women with the disease. (In fact, I learned about it from other patients as well.) Excision is considered the gold standard of treatment for endometriosis…yet there are a whopping two paragraphs in the book that even mention it. That is a gross oversight of a treatment that has been effective for so many women.

Why on earth would such a resourceful and strong woman let herself be defeated by long wait lists and an insurance battle? “What does it matter to me?” It matters because excision might be able to significantly help you.

I was in a bad place physically when I learned about the existence of excision surgery. I was bedridden and in incredible pain. I had no quality of life. But I knew that excision was my only chance to become a functioning member of society again.

The author is absolutely correct in that not every patient has access to excision surgery. That is one of the greatest travesties of endometriosis. So few women have access because with an estimated 176 million women worldwide suffering from endometriosis, there are somewhere in the realm of 100 surgeons who are considered expert excisionists. You don’t need to be Einstein to determine that that’s an impossible situation to deal with.

As for me, from the time I heard back from the surgeon’s office that I had been accepted as a patient, I waited only seven weeks for surgery, and the first date I was offered was only four weeks away. My insurance wouldn’t cover the procedure because of a national misconception, perpetuated by government medical agencies, that excision isn’t necessary. So we paid out of pocket. Not everyone is able to do that. Not every patient is able to travel 700 miles for surgery, either. But we decided we couldn’t put a price on my health. I was only 28 at the time. Think about it: would you rather be bedridden for the rest of your life, racking up bills from doctor’s appointments, emergency room visits, useless medications, and ineffective surgeries?

It’s been 3 1/2 years since my excision surgery and my endometriosis is still gone. I have separate problems with adenomyosis and a misbehaving right ovary, but those aren’t related to endo.

I’m not saying this was a bad book. As a memoir, it was interesting and well done. All women, and quite frankly, a lot of men, should read this. It was truly eye-opening in its revelations about the history of women’s pain and the disparities therein. But with regards to educating the reader about some of the most important aspects of endometriosis, it unfortunately fell short.

💛ribbonrx