Medical Male-practice in the Manstitute of Medicine
January 21, 2019 4:01 PM   Subscribe

I Needed A Hysterectomy At Age 31. Doctors Fought Me Every Step Of The Way. Ace Ratcliff describes six years of unnecessary pain, suffering and medical bills in pursuit of a hysterectomy. "I ran into roadblocks from the start. Doctors refused to take me seriously when I requested a surgical hysterectomy... And nothing I said could change my doctors’ minds, not the stories about my frequently dislocating hips, my mom’s complicated pregnancies or the increased rate of miscarriage and preterm labor for EDS patients."
I ran into roadblocks from the start. Doctors refused to take me seriously when I requested a surgical hysterectomy. “You’re not even 30 yet,” they patronizingly told me. “You might change your mind about having children. Your future partner might want children!”

Somehow, my personal autonomy, my health and my comfort didn’t rate high enough to outrank the desires of my future, then-nonexistent partner. And nothing I said could change my doctors’ minds, not the stories about my frequently dislocating hips, my mom’s complicated pregnancies or the increased rate of miscarriage and preterm labor for EDS patients.

...

What strikes me most about this entire experience is that so much of my pain could have been avoided with a number of easy solutions. Unfortunately, if you think my story is unique, you’re wrong: Stories abound of people with female reproductive organs whose pain and health issues weren’t taken seriously until they started having fertility issues ― or, inversely, of those whose doctors shrugged off their concerns because taking care of them may have affected their ability to reproduce.
Ace Ratcliff previously: Tattoos, Pain, And Incurable Illness

The blatantly biased treatment Ratcliff experienced has always been the norm for women seeking medical help, and goes far beyond hysterectomies.

Eileen Pollack: Invalid: How the medical establishment undermines, misdiagnoses, and gaslights women
What Dusenbery’s book makes maddeningly clear is how often women find themselves trapped in illogical paradoxes and self-defeating cycles, even when the people who create those traps are supposedly logical, kindhearted scientists. For decades, older male doctors taught medical students that rich white women feigned their “diseases” because they were bored, desirous of attention, or reluctant to accept their roles as wives and mothers. According to this theory, a middle-class woman who chose to work outside her home was probably suffering the ills brought on by delayed or reduced pregnancies. A woman who wanted to have it all but wasn’t smart, talented, or tough enough to achieve her goals would fake a disease that granted her the excuse to give up and stay home.

The supposed proof for this assessment was that poor, black, and working-class women never complained of the “diseases” that afflicted their richer, whiter counterparts. Of course, poor women, black women, and working-class women did suffer the same symptoms; they just couldn’t afford to visit a doctor.

From the earliest times, male physicians dismissed women as too frail or irrational to practice medicine, while not so coincidentally viewing these same women as hypochondriacs who made good-paying clients. In the early 20th century, Freud provided a “scientific” framework for ascribing a woman’s complaints to repressed trauma or neuroses, which the patient wouldn’t be able to recognize; this allowed doctors to feel fine about their biases even as they couldn’t explain why a patient felt the way she felt, let alone cure her.

As Dusenbery points out, physicians rarely find out that the women they dismiss as fakers are actually suffering from multiple sclerosis or an autoimmune disease (or, in my case, a spinal cord injury or ruptured ovarian cyst). As a result, most doctors are able to keep believing that their colleagues are the ones making all the misdiagnoses.

Women get diagnosed with mental illness more often than men, perhaps because society inflicts more pressures on women, or because mental health professionals are more apt to view women as crazy, or because society discourages men from admitting they have problems. Whatever the cause, if your medical record indicates you are prone to depression, any physical symptoms you profess are more likely to be attributed to your mental illness.

Here’s the real mindfuck: Medical professionals tend to dismiss as hypochondriacs people who visit doctors frequently, use pain medications excessively, ask for surgery, and generally act in ways an invalid would act—all of which correspond with the behavior of someone who suffers from a real disease no one believes she has.

As I wrote the previous paragraph, it occurred to me the word “invalid” is spelled the same as “invalid.”
Laurie Edwards: The Pain Isn't In Your Head. And Other Truths Of The Female Experience
Gender bias in medicine is well-known and deeply ingrained: a disproportionate number of women experience pain conditions, their symptoms are more likely than men’s to be considered psychogenic and treated with antidepressants rather than pain medicine, and when women do receive appropriate treatment for symptoms, they wait longer to receive it.

We can now add a potential new angle to the gender bias conversation. According to a new report by the International Consortium of Investigative Journalism, when it comes to medical device and implant failures, women face disproportionate harm.

There are two key scenarios outlined in the ICIJ report — complications and failures in devices and implants designed for conditions that primarily affect women, including bladder prolapse or breast cancer, and higher complications and failure rates compared to men with devices like heart pumps or artificial hips. But perhaps the most compelling takeaway from the year-long investigation and interviews with patients is that when women reported symptoms and illnesses they suspected were related to their implants, their complaints were dismissed.
posted by homunculus (37 comments total) 70 users marked this as a favorite


 
Tressie McMillan Cottom: I Was Pregnant and in Crisis. All the Doctors and Nurses Saw Was an Incompetent Black Woman
Everything about the structure of trying to get medical care had filtered me through assumptions of my incompetence. There it was, what I had always been afraid of, what I must have known since I was a child I needed to prepare to defend myself against, and what it would take me years to accept was beyond my control. Like millions of women of color, especially black women, the healthcare machine could not imagine me as competent and so it neglected and ignored me until I was incompetent. Pain short-circuits rational thought. It can change all of your perceptions of reality. If you are in enough physical pain, your brain can see what isn’t there. Pain, like pregnancy, is inconvenient for bureaucratic efficiency and has little use in a capitalist regime. When the medical profession systematically denies the existence of black women’s pain, underdiagnoses our pain, refuses to alleviate or treat our pain, healthcare marks us as incompetent bureaucratic subjects. Then it serves us accordingly.
posted by homunculus at 4:14 PM on January 21 [21 favorites]


Doctors didn't take my pelvic pain seriously until my uterus collapsed and pushed out of my vagina. They didn't take me seriously until I literally had an organ try to escape my body.
posted by headspace at 4:20 PM on January 21 [54 favorites]


This hits so close to home that it’s painful. It’s even worse that some of the most dismissive and incompetent care has come from woman doctors, but they’re swimming in the same bullshit we all are so it’s not surprising.

There’s also an entire site out that kept coming up over and over while I researched my recent diagnosis of endometrial hyperplasia that is dedicated to fighting against hysterectomies by claiming that people who have them no longer experience orgasms fully and other hideous fear-mongering.

As I understand it, the site was started by someone who felt the medical community was pushing them on women without giving them an understanding of the risks. This is a great cause, and yet somehow it turned into yet another way to make women feel hopeless and punished for self advocacy through derision and bullying of anyone who elects to get a hysterectomy.

My partner had one in her early 20’s and was scared to tell me but felt she had to on our second date in case it meant I didn’t want to see her anymore, which baffled me. But I guess when the narrative is that reproductive organs are a woman’s most precious gift, it makes sense. (Now we just blame her “ghost ovaries” for any shenanigans around the house, like missing socks or a pattern of burnt out lights.)
posted by the thorn bushes have roses at 4:33 PM on January 21 [37 favorites]


My partner and a good friend of mine have this same story. The quivering rage they get when they talk about how infantilizing the conversations get is, frankly, kind of scary. Like they get so angry I think they might swing on me just because I'm in front of them. And I understand, I'd be that angry to.

One of them got to throw a no baby shower eventually and we all got her nice liquor.
posted by East14thTaco at 4:34 PM on January 21 [14 favorites]


Even being rich and famous doesn't make doctors take you seriously if you're a woman, as Serena Williams found out during childbirth.
posted by Daily Alice at 4:39 PM on January 21 [15 favorites]


Oh hey! Literally just had an appointment with my partner today to address their pelvic pain, which other doctors had brushed off as "just constipation." Thanks to a doc that actually listened and was proactive instead of shrugging and telling them to keep taking birth control, they're finally getting a laparoscopy despite having had symptoms of endometriosis for 7+ years.

I would like to note that the best and most empathetic care my partner has ever received has been from 1) a Muslim woman of color (who was extremely proactive in ruling out GI issues while being totally open and sensitive to the possibility of endometriosis), and 2) a fat woman (who believed my partner immediately and helped lay out a plan to diagnose and treat the problem). Skinny white women have primarily told them to exercise and eat more fiber.
posted by brook horse at 4:50 PM on January 21 [29 favorites]


I read the piece from Tressie M.C. when it went around the tweets a few weeks ago. I am generally a chilly human, I will admit.

I cried. At work, I cried. Fucking broke my heart.
posted by Dashy at 5:07 PM on January 21 [6 favorites]


Am I exempt from reading this article because if I do, I will rage-throw my phone across the room? I want to be supportive and informed, y’all, but this shit pushes my every gd button.

Just know that this white lady believes your pain is real. Even if she just can’t read about it today.
posted by greermahoney at 5:07 PM on January 21 [17 favorites]


Generally, Ob/Gyns have the highest malpractice insurance premiums among the different medical specialties. This is sometimes attributed to the fact that they have longer tail risks or something like that. However, I've always harbored the suspicion that maybe Ob/Gyns have the highest malpractice premiums because, well, they commit the most and/or most severe malpractice. I mean, when you have a specialty that treats pretty much exclusively women within a profession that is still fairly male-dominated (and also carrying the historical baggage of once being 100% patriarchial), I can easily imagine how this would be.
posted by mhum at 5:15 PM on January 21 [32 favorites]


It took nearly 15 years for my pretty textbook endo to be diagnosed last year. Male doctor after Female doctor after Male doctor dismissed my pain and GI issues and pain and mood issues and pain and heavy heavy heavy bleeding as normal- it took til 17 for them to even admit I needed birth control (didn't want me to be promiscuous was what one said) and it took til 29 to finally get referred to my current DR and surgeon, a WOC who specializes in endo who took me seriously and believed me and opened me up, and guess what? TEXTBOOK ENDO. Luckily for me, it's stage 1 and it can be treated with androgens and the like. So hopefully for me I won't need a Hysto, I do want kids- though I was prepared to get one if I needed it, and my new Doc was willing if it was necessary. I'm grateful- but so so so mad. This should have been diagnosed in me as a teenager not now.
posted by Homo neanderthalensis at 5:16 PM on January 21 [20 favorites]


It comes down to this for me: either people are adults or they aren't. At a certain point we tell people, OK, now you can make choices about your your life for better or worse and good luck. Every time you say "Well maybe you shouldn't actually be allowed to make that choice" is yanking the rug from under that person. It breeds resentment, sadness, anger, and shame.

But I guess it keeps premiums down.
posted by East14thTaco at 5:38 PM on January 21 [20 favorites]


a friend of mine finally got diagnosed with a bleeding disorder after years of incapacitating periods that would sometimes put her in the hospital for fluids because she was bleeding o much. It took over 30 years for a doctor to finally go “hmm, no, the fact that you sometimes bleed so much during your period you have to be hospitalized isn’t normal”.
posted by Ghostride The Whip at 7:27 PM on January 21 [8 favorites]


I am very close with a competent female OB/GYN in the Seattle area who has personally recommended and/or performed many hysterectomies for diverse and necessary reasons. She got out of the pregnancy/delivery game early on and moved into more gynecology. She has performed other surgeries too like ovariectomies and terminations (her word for what we call abortions). She used to give talks about the merits of this or that method of birth control, including for indirect reasons like relieving uterine cramps and menopause symptoms. She would readily believe you if you reported pains; PCOS, endometriosis, cysts, she's seen it all.

I have heard and read so many OB/GYN horror stories from women that I literally asked her if I could give out her phone number to a woman who needs competent-doctor help, if I happen to meet one. She is retired from surgery and new patients, but if you or your friend needs a recommendation of another OB/GYN, she may be able to help you. Please message me if you need to.
posted by panhopticon at 8:05 PM on January 21 [23 favorites]


I linked this satirical BMJ piece in the post I made yesterday about chronic pain patients who can't get painkillers anymore. There should be another version for patients of misogynist doctors, only the patients would be kicking a bit higher than the doctors' shins. Here's a link to the piece on Medium:

Prescriber’s narcophobia syndrome: physicians’ disease and patients’ misfortune
posted by homunculus at 10:21 PM on January 21 [3 favorites]


Yeah I’m less than a week away from my hysterectomy. My chronic illness life is far too raw for me to read anything this triggering. I believe you.
posted by Crystalinne at 10:43 PM on January 21 [13 favorites]




I know this is going to sound hyperbolic, but it is not. I am on birth control for non-birth control reasons and I once had a doctor in urgent care take a full step backward away from me when I told him I don't have sex with men.
posted by Sophie1 at 8:17 AM on January 22 [20 favorites]


Sophie1 — that is not only not at all hyperbolic, but I have had very similar responses with the same line. Isn't it depressing that medical doctors, who one presumes are schooled to control their emotions when talking to patients, can't handle such a benign statement without an obvious recoil?
posted by the thorn bushes have roses at 8:46 AM on January 22 [1 favorite]


I am trans/non-binary partly because of dysphoria brought on by masculine toxicity in medicine. Combined with a feminist upbringing, these are some of the reasons I try to be available to do medical advocacy for friends and acquaintances (time permitting). I do pass well for upper middle class dude if I dress up and am intentional about it, and I firmly believe that those of us who enjoy privilege ought to leverage it to help others.
posted by kalessin at 8:53 AM on January 22 [9 favorites]


I was standing in the driveway talking with my stepmom and my step sister. My sister looked awful, like she was ageing a year a minute and the pursing of her lips was getting set in, you can't just ask, "God damn what is happening to you?" But I asked her how she has been. She just started the tale that she was bleeding, bleeding, bleeding out, and in constant pain, the docs would not give her a hysterectomy, they had something called a hot balloon treatment that would cauterize the blood vessels of her uterus and she was going back in for another consult. Some time passed and I heard she had been hospitalized. My mom told me what happened, my sis was in her fifties then, and some time before a piece of metal had come off an IUD. It pierced her uterus, then passed through, so the uterine pain and bleeding stopped, after it healed. (With no DNC, or xray even.) Then the metal pierced her bowel, and when she started bleeding from elsewhere, then she received a colonoscopy and they found the problem. As long as it wasn't a lady problem they could diagnose and treat.
posted by Oyéah at 8:57 AM on January 22 [6 favorites]


I screwed up when I was making this post: I meant for Tressie McMillan Cottom's piece to be part of the FPP but I hit 'post' instead of 'preview' accidentally. I also meant for her name to have links in it like the others, so here those are:

Her homepage: tressiemc
Her Wikipedia page: Tressie McMillan Cottom
Her Twitter account: @tressiemcphd
posted by homunculus at 9:56 AM on January 22 [6 favorites]


This is a bit of a tangent but if you're look for some whiz-bang female driven sci-fi Kameron Hurley's Bel Dame Apocrypha is really good. The protagonist sells her uterus on page one and it never comes up again. No "woe is me I can't have kids moment" or anything else.

It's not a "fun" series by any means but it's a great read and has a satisfying ending.
posted by East14thTaco at 10:23 AM on January 22 [2 favorites]


When I recounted to my (male) therapist how my right side abdominal pain had been dismissed:
- by an ER Dr. that said it was probably "only" menstrual pain and that it was normal, I should go home (and I did) rather than wait hours for an ultrasound
- After I returned to a clinic and insisted on an ultrasound, by the radiologist who interpreted the results and wrote "small hemorrhaging cyst, no pain associated, no follow up required".

I brought the ultrasound results to therapy, sobbing, asking, how can this be? What am I not getting? The cyst was 4 by 5 cm at that point, how is that small or normal? What is normal? Am I overreacting? The ER doctor had asked me how bad the pain was in a scale of 1 to 10 , and I'd said on a good day 2 or 3, and in acute moments 6 or 7.

My therapist went on his computer and looked up "ovarian cyst"in his clever medical knowledge (UpToDate.com) database, and showed me that, in fact, pain for ruptured cysts could be moderate to severe. And I asked him again, I don't understand. The radiologist found there could be no pain. My therapist just said, "and I'm telling you he was wrong to write that. It goes against the findings in current research."

I'm pretty sure that sobbing in his office, asking questions, trying to be objective about my pain, I displayed all the signs and symptoms of gaslighting. And it turns out my therapist does not use the language of social justice, but he finds himself in a position to have to advocate for socially vulnerable patients on a regular basis. He didn't have to say "I believe you", but he knew what he was doing when he helped me there.

He then went on to say that pain is subjective, it's there when the patient reports that it's there. And that's where I decided that, on a scale from 1-10, I'll answer based on how much distress it would cause me to get my pain dismissed by doctors who are full of shit.
posted by ipsative at 10:34 AM on January 22 [13 favorites]


Ace Ratcliff's latest piece is extraordinary:

Meatcage. "My body, my diagnosis, means I am an intrepid adventurer exploring an undiscovered planet, with little warnings as to what local flora and fauna might hurt me — or how, but I am learning."
posted by homunculus at 10:55 AM on January 22 [3 favorites]


So, if you follow my posts and comments you might know I have PTSD from sexual abuse.

I ALSO have Endometriosis.

Due to the course of my mental health my mental health medical record is like five miles long and spans most of the major hospital networks in the area.

I was 32 when I had surgery and ablasions done (my intestines had adhered to my abdominal wall! They are now freeeeee) I had sex for the first time IN MY LIFE with no pain just a couple weeks afterwards.

I cannot even begin to describe the long medical journey that led to that point, and how many times by therapist and by medical doctors my PTSD must be the cause of pain during because duh I am a very traumatized individual. And I am. But I'm also very aware of the things that are triggers and the things that just are my body.

I'm still really mad at the last therapist who went on the psychosomatic angle with me, especially when at that point I had already had one surgury and was trying to get the second. And my pain followed predictable patterns related to my cycles and I'd mapped it and proved to the medical establishment and didn't have the time or energy to go through it with her especially as my group therapist only. Overall she was amazing but it was so painful to be discounted again and again about this.

Of course my insurance didn't cover all of the surgery, even though I'd met my out if pocket max for the year and now I owe the fantastic doctor who did it thousands of dollars and can't get another surgery unless I pay it off sooo... I guess I'll figure out a way for a hysterectomy at some point.

But if you need a recommendation for someone in the Chicago area, he is great give me a pm.
posted by AlexiaSky at 11:29 AM on January 22 [4 favorites]


Leslie Jamison, Spring 2014: Grand Unified Theory of Female Pain

Jamison's piece is astonishingly good and should not be missed.

Previously: Female Pain

(I chose poorly on the pull quote, but the piece shouldn't be judged on that.)
posted by homunculus at 12:03 PM on January 22 [3 favorites]


What really bothers me that being pregnant is mostly* the result of a choice--a choice to have a baby or a choice to engage in sexual practices that might result in pregnancy. In Ontario, any pregnant woman can call up an OBGYN, book an appointment and have a physician who will take care of her needs. She doesn't need approval or permission from any other layer of medical practitioner.

Having a medical issue such as cysts or fibroids or irregular bleeding or endometriosis or [insert your female medical problem here] isn't a choice at all, and yet getting access to an OBGYN is practically impossible. A women with problems can't just call up a doctor, ask if they are accepting new patients and book an appointment. Instead the woman is forced to go through the referral process from a GP who may (or may not for whatever reason) be willing to book an appointment. And then there's a waiting time measured in years, assuming an appointment can be made at all or made in a relatively close geographic area.

Yes, I realize pregnancy comes with a very tight, set timeline, and there are more than valid reasons for ensuring good prenatal care is delivered. I'm not against any of that. I'm just against making women suffer for ages without treatment for the simple reason that they're women with issues who aren't pregnant, as if the only way women have the right to medical treatment is if it's not for themselves but for whatever baby they are carrying.

*Let's all assume we're grown-up enough that I don't have to spell out the reasons why a woman may end up pregnant for reasons not of her choosing.
posted by sardonyx at 12:20 PM on January 22 [6 favorites]


Why middle-class black women dread the doctor’s office, an interview with UC Berkeley prof Tina Sacks regarding her new book, Invisible Visits: Black Middle-Class Women in the American Healthcare System.
posted by Zed at 12:00 AM on January 23 [2 favorites]


After my emergency hysterectomy at age 40 (another lovely, long and triggering story), I had considerable pain during sex. This resulted in some unpleasant pressure from my (then) husband. My female OB/GYN dutifully went through all the list of causes, among them of course was "psychosomatic" so she sent me to a psychiatrist.

At the first visit I sat down with the (older, male) psy doc and he asked what brought me there that day, I said, "Sex hurts so badly I can't have sex with my husband" and he leaned forward and looked very concerned and said, "Well, how does your husband feel about that?"

I never went back and even now, over twenty years later I am seething with rage.
posted by mannyfeefees at 3:56 AM on January 23 [9 favorites]


As a black woman in America, this is all hitting super close to home, and I don't know what to do.
posted by koucha at 1:32 PM on January 23 [5 favorites]


Since I recently joined Twitter I've started mirroring my MeFi posts as Twitter threads to see how it works over there. Here's this one if anyone is interested:

Thread: How the medical establishment undermines, misdiagnoses, and gaslights women
posted by homunculus at 1:35 AM on January 24


It's long been my observation (and others') that accounting for how all our (minorities') experiences differ, and how they're not meaningfully comparable (this is the academic usage of the term, "intersectionality"), in sharp contrast, it's interesting how institutions and the majority almost always use the same or quite similar tactics to enforce the unfair status quo that keeps them in power.

This is a long-winded way for me to say (while trying to also build bridges based on, unfortunately, shared suffering and common cause) that my experiences as a trans, intersex, and disabled person closely mirror these. The medical establishment has, all my life, gaslighted, minimized, and dismissed almost all of my health concerns and complaints and questions. Told me I had a "low pain threshold" and done many other terrible things in an effort to keep me down.

And those are other reasons I try to do medical advocacy for anyone who'll have it. And also why I am often delving into medical literature. To have some leverage with these people and their institutions.
posted by kalessin at 11:24 AM on January 24 [2 favorites]


There’s No Medical Reason to Get Your Period While On the Pill: New guidelines in the U.K. note what many women and researchers have known for a while.
Why do we have medically unnecessary placebo pills in the first place? Researchers have actually known for decades that so-called “extended” or “continuous” cycles are safe, according to a 2008 paper exploring the merits of forgoing the placebo week. The reasoning was never medical: “It was presumed that regular withdrawal bleeding was critical to increase acceptance of the [oral hormonal contraceptives],” the researchers write. Specifically, periods were built into the pill in attempt make birth control more acceptable to the Pope, reports the Telegraph. Nonetheless, until 2003, when the four-periods-a-year Seasonale was introduced, all pill packs in the States included a week of placebos. Period-skipping was sometimes used off-label to manage menstrual disorders, says that research paper.
posted by homunculus at 1:28 PM on January 24 [2 favorites]


Update: We had to talk with another skinny white woman for a consult before the laparoscopy. My partner mentioned that the fatigue is interfering with their life more than the pain and the doctor basically said then it’s probably not endometriosis and they don’t need a laparoscopy. Because the pain doesn’t matter if the fatigue is worse, ignoring the fact that pain is incredibly fatiguing! So... never fucking mind I guess!
posted by brook horse at 10:47 AM on January 25






The lead researcher on the Yale study mentioned in the piece above takes issue with how the author described its results.
posted by homunculus at 6:06 PM on February 19


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