Lena Dunham on Her Decision to Have a Hysterectomy at 31
February 15, 2018 8:32 AM Subscribe
Lena Dunham wrote a (characteristically) brutally honest and emotional piece for Vogue about having to have a hysterectomy at 31 as a result of debilitating endometriosis - despite desperately wanting to carry her own children someday.
I'm guessing the publish date (Feb 14th) was not entirely coincidental...
I'm guessing the publish date (Feb 14th) was not entirely coincidental...
She may have writing skills, but appears to be a questionable person on so many other levels. I don't even know why this is news. This happens to women all the time. I really wish people would stop giving her a platform to speak from.
posted by New England Cultist at 9:31 AM on February 15, 2018 [48 favorites]
posted by New England Cultist at 9:31 AM on February 15, 2018 [48 favorites]
I was going to say I watched the same thing happen to a coworker that was a beautiful, sweet and nice person. She was 19.
posted by Samizdata at 9:33 AM on February 15, 2018 [2 favorites]
posted by Samizdata at 9:33 AM on February 15, 2018 [2 favorites]
She may have writing skills, but appears to be a questionable person on so many other levels.
Someone can be questionable and also shine a light on endometriosis, something swept under the rug over and over again by medical professionals and our society.
Until my wife's hysterectomy I never understood how awful her endo was. She's a completely different person now.
And we're doing jack to find non-invasive solutions to this. The only treatment most of the time is a hysterectomy. In fact, many women don't even know they have endometriosis until they have a hysterectomy.
Lena Dunham is problematic (and easily mockable for being so) but the message is crucial.
posted by dw at 9:42 AM on February 15, 2018 [66 favorites]
Someone can be questionable and also shine a light on endometriosis, something swept under the rug over and over again by medical professionals and our society.
Until my wife's hysterectomy I never understood how awful her endo was. She's a completely different person now.
And we're doing jack to find non-invasive solutions to this. The only treatment most of the time is a hysterectomy. In fact, many women don't even know they have endometriosis until they have a hysterectomy.
Lena Dunham is problematic (and easily mockable for being so) but the message is crucial.
posted by dw at 9:42 AM on February 15, 2018 [66 favorites]
Yes, this happens to women all the time, but many don't feel like they can speak up or they don't have access to a platform like Vogue. Lena Dunham is not my favorite person but I'm glad she wrote this piece if not for herself, but for those women who now might feel some comfort in knowing that they aren't alone.
posted by like_neon at 9:43 AM on February 15, 2018 [18 favorites]
posted by like_neon at 9:43 AM on February 15, 2018 [18 favorites]
And we're doing jack to find non-invasive solutions to this. The only treatment most of the time is a hysterectomy. In fact, many women don't even know they have endometriosis until they have a hysterectomy.
Oh my god this. When I read the description of her uterus after they removed it, I had to read it twice to make sure she wasn't joking. There was something majorly wrong with her body (many things from the sounds of it) and they couldn't tell her any of this (let alone treat any of it) until after this traumatising procedure?
This system is bullshit for women.
posted by like_neon at 9:46 AM on February 15, 2018 [16 favorites]
Oh my god this. When I read the description of her uterus after they removed it, I had to read it twice to make sure she wasn't joking. There was something majorly wrong with her body (many things from the sounds of it) and they couldn't tell her any of this (let alone treat any of it) until after this traumatising procedure?
This system is bullshit for women.
posted by like_neon at 9:46 AM on February 15, 2018 [16 favorites]
I really really want to make an app or write a book for medical professionals about the counteracting the bias their profession perpetuates (to put it nicely) and/or the bullshit that they put women through because of it. And not just women, of course, but people of color, folks with disabilities, fat people, etc.
/get it as a class or at least a content unit into medical school curricula.
posted by emkelley at 11:31 AM on February 15, 2018 [8 favorites]
/get it as a class or at least a content unit into medical school curricula.
posted by emkelley at 11:31 AM on February 15, 2018 [8 favorites]
Which is not the same as working towards removing bias systemically, which I want to work on too.
posted by emkelley at 11:33 AM on February 15, 2018 [1 favorite]
posted by emkelley at 11:33 AM on February 15, 2018 [1 favorite]
The Guardian had an excellent and very alarming article about endo a couple of years ago which pointed out that the estimated -- and probably underestimated -- economic toll of endo is comparable to that of diabetes, yet the research money spent on investigating causes and treatments isn't even one percent of that devoted to diabetes.
And endo seems to be getting more prevalent and also worse in individual cases
posted by jamjam at 11:58 AM on February 15, 2018 [11 favorites]
And endo seems to be getting more prevalent and also worse in individual cases
posted by jamjam at 11:58 AM on February 15, 2018 [11 favorites]
No one cares about a woman's uterus unless there's a baby she doesn't want in it.
posted by xyzzy at 12:06 PM on February 15, 2018 [96 favorites]
posted by xyzzy at 12:06 PM on February 15, 2018 [96 favorites]
Thanks for posting. Somehow I continue to be amazed on how the entire medical research field is steeped in misogyny. Good for Lena for demanding her care, and I'm glad that at a bare minimum, her doctors listened to her. I do feel bad for her future plans to be upset, and that she couldn't mourn in the way she wanted because it could be misconstrued. :/
posted by Hermeowne Grangepurr at 12:18 PM on February 15, 2018 [1 favorite]
posted by Hermeowne Grangepurr at 12:18 PM on February 15, 2018 [1 favorite]
Personally, I really hate that the title on the article that is claiming her surgery was a "decision" as if she had a choice in the matter. In reality, she didn't. I feel that talking about surgery related to illness, especially surgery related to endometriosis such as hysterectomy is often called a "choice" because as women we are seen as our ability to have children.
But when you're in that much pain, it isn't a choice. As she states, she couldn't have had a child anyway with that much pain.
Discussions around the last resort TREATMENT for endo as a decision or choice feels very ableist. It reminds me of the times people tell me they "can't imagine" living in my body with illness, as if I have some magical willpower.
Endometriosis knowledge is so poor and it's completely depressing. Even now there are still doctors constantly performing non-effective surgery, treatments, and claiming test results are "normal".
I have endometriosis in addition to other chronic disabling issues and some wonderful people on here helped me understand but there's still so much misinformation. (For example resection is necessary for treatment.) I've had to load women up with links on Instagram DMs who reached out to me and said their doctors told them they were "fine" because an ultrasound was normal, so clearly they "don't have endo."
According to The Guardian:
...for each person believed to have diabetes in the United States, the NIH spends $35.66 annually. For each woman with endometriosis, the NIH spends $0.92.
Yet, from my research the numbers of those with diabetes are similar to those with endo.
It's clear that the lack of funding is because it's a "women's issue" and that it's "invisible."
Women are routinely disbelieved about their own pain when often, many chronic illnesses primarily affect women.
Insurers don't care about women. My surgeon was forced to be out of network because they often don't approve resection as necessary. So he choose to be out of network so that they could actually get surgeries done. They will pay for cauterization which leads to more problems and lack of treatment.
There's so much lacking in research. For example I also have POTS. I was nervous for surgery again given my last time with gallbladder surgery and awful recovery when I didn't know I had POTS at the time. My surgeon said, "Oh, I've had lots of patients with POTS and they do well after surgery. I understand how POTS works."
So, why have so many patients at my top endometriosis surgeon also had POTS when it's supposed to be rare? Is there a connection? Why do so many women I see on Instagram also have POTS or other illnesses (beyond IBS) with endometriosis? I can tell you all symptoms of illness in my body improved after recession surgery. But no one is studying me. The kicker is they believe you have it from your start (and even before) menstruation. I always had hellish periods. 13 years of hellish periods before surgery. And yes, I still have pain and symptoms.
I'm "lucky" in the sense that I'm chronically ill. I've had to deal with so much bullshit up to the point that I realized I had endometriosis. So I know how to find doctors, do research, understand medical lingo, convince people I have a problem. I'm also lucky that we have a top endometriosis surgeon nearby. I'm lucky I have insurance and could pay the over $3000 out of pocket bill.
Others are not so lucky. But they could be, with education and research and understanding and actual care about women's health.
I read the piece and agree it's well written, and I don't really support her as a personality given the issues I've seen arise. That being said, yes endometriosis needs to be discussed more. Another celebrity who discusses endometriosis is Halsey.
posted by Crystalinne at 12:37 PM on February 15, 2018 [27 favorites]
But when you're in that much pain, it isn't a choice. As she states, she couldn't have had a child anyway with that much pain.
Discussions around the last resort TREATMENT for endo as a decision or choice feels very ableist. It reminds me of the times people tell me they "can't imagine" living in my body with illness, as if I have some magical willpower.
Endometriosis knowledge is so poor and it's completely depressing. Even now there are still doctors constantly performing non-effective surgery, treatments, and claiming test results are "normal".
I have endometriosis in addition to other chronic disabling issues and some wonderful people on here helped me understand but there's still so much misinformation. (For example resection is necessary for treatment.) I've had to load women up with links on Instagram DMs who reached out to me and said their doctors told them they were "fine" because an ultrasound was normal, so clearly they "don't have endo."
According to The Guardian:
...for each person believed to have diabetes in the United States, the NIH spends $35.66 annually. For each woman with endometriosis, the NIH spends $0.92.
Yet, from my research the numbers of those with diabetes are similar to those with endo.
It's clear that the lack of funding is because it's a "women's issue" and that it's "invisible."
Women are routinely disbelieved about their own pain when often, many chronic illnesses primarily affect women.
Insurers don't care about women. My surgeon was forced to be out of network because they often don't approve resection as necessary. So he choose to be out of network so that they could actually get surgeries done. They will pay for cauterization which leads to more problems and lack of treatment.
There's so much lacking in research. For example I also have POTS. I was nervous for surgery again given my last time with gallbladder surgery and awful recovery when I didn't know I had POTS at the time. My surgeon said, "Oh, I've had lots of patients with POTS and they do well after surgery. I understand how POTS works."
So, why have so many patients at my top endometriosis surgeon also had POTS when it's supposed to be rare? Is there a connection? Why do so many women I see on Instagram also have POTS or other illnesses (beyond IBS) with endometriosis? I can tell you all symptoms of illness in my body improved after recession surgery. But no one is studying me. The kicker is they believe you have it from your start (and even before) menstruation. I always had hellish periods. 13 years of hellish periods before surgery. And yes, I still have pain and symptoms.
I'm "lucky" in the sense that I'm chronically ill. I've had to deal with so much bullshit up to the point that I realized I had endometriosis. So I know how to find doctors, do research, understand medical lingo, convince people I have a problem. I'm also lucky that we have a top endometriosis surgeon nearby. I'm lucky I have insurance and could pay the over $3000 out of pocket bill.
Others are not so lucky. But they could be, with education and research and understanding and actual care about women's health.
I read the piece and agree it's well written, and I don't really support her as a personality given the issues I've seen arise. That being said, yes endometriosis needs to be discussed more. Another celebrity who discusses endometriosis is Halsey.
posted by Crystalinne at 12:37 PM on February 15, 2018 [27 favorites]
“Is there any chance you could be pregnant?” she asks as she gives me my meds one last time.
“Well, not after tomorrow,” I say. I wish there were a word for when nobody likes your jokes but you make them anyway.
Okay lol. And, as ever, I'm left wondering exactly how self-aware she is.
Even though I frequently wish Lena Dunham would shut the fuck up, I also wonder how I would feel about her in a world where women weren't judged waaaay more harshly than men. When I try to think of a male celeb or artist who aggravates me as much as Lena Dunham, I can only think of a) men who are much more awful human beings or b) men who are less talented.
posted by grandiloquiet at 1:49 PM on February 15, 2018 [9 favorites]
“Well, not after tomorrow,” I say. I wish there were a word for when nobody likes your jokes but you make them anyway.
Okay lol. And, as ever, I'm left wondering exactly how self-aware she is.
Even though I frequently wish Lena Dunham would shut the fuck up, I also wonder how I would feel about her in a world where women weren't judged waaaay more harshly than men. When I try to think of a male celeb or artist who aggravates me as much as Lena Dunham, I can only think of a) men who are much more awful human beings or b) men who are less talented.
posted by grandiloquiet at 1:49 PM on February 15, 2018 [9 favorites]
I think you're really onto something about the connection between endo and POTS, Crystalinne.
Because POTS is associated with joint hypermobility syndrome, which is caused by collagen which is too stretchy, and that in turn causes internal organs to be too stretchy, and their supporting structures to be too stretchy to hold them in place properly, leading to irritable bowel and a bunch of other things.
And from a perspective of internal organs which don't stay in place properly, the adhesions of endometriosis can look like structural reinforcements that hold things in place and actually improve function.
But that wouldn't explain why it seems to be increasing the way it is, and also getting so much worse in the individual cases of women who have it.
posted by jamjam at 1:58 PM on February 15, 2018 [1 favorite]
Because POTS is associated with joint hypermobility syndrome, which is caused by collagen which is too stretchy, and that in turn causes internal organs to be too stretchy, and their supporting structures to be too stretchy to hold them in place properly, leading to irritable bowel and a bunch of other things.
And from a perspective of internal organs which don't stay in place properly, the adhesions of endometriosis can look like structural reinforcements that hold things in place and actually improve function.
But that wouldn't explain why it seems to be increasing the way it is, and also getting so much worse in the individual cases of women who have it.
posted by jamjam at 1:58 PM on February 15, 2018 [1 favorite]
An Endometriosis Expert on Why Lena Dunham’s Hysterectomy Is Unusual
posted by jenfullmoon at 3:26 PM on February 15, 2018 [13 favorites]
posted by jenfullmoon at 3:26 PM on February 15, 2018 [13 favorites]
But when you're in that much pain, it isn't a choice.
Well, yes and no.
Lena Dunham had the choice because she had the money to do so. I also have endo. I'm 38, I started hormonal birth control at 13 because of the pain, and I've been begging doctors for years to take my uterus out. My GYN (a nurse practitioner) is wonderful and I've been with her for twenty years, but we're mired in insurance red tape. See, I'd need BRCA testing first, which should be straightforward, because my maternal grandmother died of ovarian cancer and my mother's oldest sister died of breast cancer, so I meet the qualifications... Wait, let me backtrack a second, I know I meet the qualifications because I read through the 59 pages of instructions and rules and regulations my insurance company has on BRCA testing. But then I have to show proof, and my nana died when my mom was 14. Oh, and the head doctor of the practice wonders if I might still want another child yet even though Kid Ruki is 16 and I am done done done with babies, that's why I got a dog. So I have a stupid Skyla IUD instead that's supposed to help with the endo cysts that kept bursting.
So it shouldn't be a choice, but it's a choice easier made when your name is Lena Dunham or Angelina Jolie.
posted by Ruki at 5:10 PM on February 15, 2018 [12 favorites]
Well, yes and no.
Lena Dunham had the choice because she had the money to do so. I also have endo. I'm 38, I started hormonal birth control at 13 because of the pain, and I've been begging doctors for years to take my uterus out. My GYN (a nurse practitioner) is wonderful and I've been with her for twenty years, but we're mired in insurance red tape. See, I'd need BRCA testing first, which should be straightforward, because my maternal grandmother died of ovarian cancer and my mother's oldest sister died of breast cancer, so I meet the qualifications... Wait, let me backtrack a second, I know I meet the qualifications because I read through the 59 pages of instructions and rules and regulations my insurance company has on BRCA testing. But then I have to show proof, and my nana died when my mom was 14. Oh, and the head doctor of the practice wonders if I might still want another child yet even though Kid Ruki is 16 and I am done done done with babies, that's why I got a dog. So I have a stupid Skyla IUD instead that's supposed to help with the endo cysts that kept bursting.
So it shouldn't be a choice, but it's a choice easier made when your name is Lena Dunham or Angelina Jolie.
posted by Ruki at 5:10 PM on February 15, 2018 [12 favorites]
I love that the link to evidence that Dunham is problematic is to Fox News. It’s almost as if we’re expected to ignore the historical behavior of the messenger and focus on the message’s content instead of, I dunno, wishing that people would stop giving Fox News a platform...
posted by eustacescrubb at 5:40 PM on February 15, 2018 [15 favorites]
posted by eustacescrubb at 5:40 PM on February 15, 2018 [15 favorites]
I was a little younger and no endo, but OOOMMMGGG so much of this was my experience, too. I never thought I would feel so much kinship with Lena Dunham.
I take a sort of perverse pleasure in answering "When was your last menstrual period" with a big, smiley "April, 2005!"
While I never really had any desire for children, having my pre-op ultrasound in a room whose walls were lined with fetal sonograms and adorable portraits of their corresponding newborns was A BIT MUCH THANK YOU.
posted by The Underpants Monster at 6:05 PM on February 15, 2018 [7 favorites]
I take a sort of perverse pleasure in answering "When was your last menstrual period" with a big, smiley "April, 2005!"
While I never really had any desire for children, having my pre-op ultrasound in a room whose walls were lined with fetal sonograms and adorable portraits of their corresponding newborns was A BIT MUCH THANK YOU.
posted by The Underpants Monster at 6:05 PM on February 15, 2018 [7 favorites]
I'm not really a fan of Lena Dunham, but I feel like a lot of the backlash against her is because she's kind of become the poster girl for that Michael Che-esque Whitefeministchicksamirite? thing, and fuck that. Because she's not perfect, she's getting dismissed as a garbage human. That sort of thing is happening way too much on the left these days. We really need to work together and listen to each other more, but everybody is just so damn eager to "call out" everybody else.
Dunham did her rep a lot of damage when she defended that friend of hers who was accused of rape, but all that showed me is that these issues can get a lot more confusing when people you actually care about are involved. She could just declare Woody Allen guilty, despite plenty of evidence to suggest he may not be, because she didn't know Allen or have any reason to be biased in his favor. When her friend was accused she was perhaps a little too ready to believe he was innocent, because she's a human being and humans are messy, conflicted creatures. Was it hypocritical? Sure. But I think it was the kind of hypocrisy almost everybody is guilty of, applying a different standard to the people we love and trust than we'd apply to strangers. She ultimately apologized for saying anything and pulled back from the whole mess, which I thought was the right call. People keep using it as evidence that she's just worthless, but I respected her for owning her mistake and knowing when to shut up.
I don't even know why this is news. This happens to women all the time. I really wish people would stop giving her a platform to speak from.
It happens to women all the time, but nobody really talks about it, so her talking about it is news. I don't think it's right for her to be seen as the voice of her generation, but I think it's good she's out there as a voice, even with her flaws.
posted by Ursula Hitler at 7:17 PM on February 15, 2018 [30 favorites]
Dunham did her rep a lot of damage when she defended that friend of hers who was accused of rape, but all that showed me is that these issues can get a lot more confusing when people you actually care about are involved. She could just declare Woody Allen guilty, despite plenty of evidence to suggest he may not be, because she didn't know Allen or have any reason to be biased in his favor. When her friend was accused she was perhaps a little too ready to believe he was innocent, because she's a human being and humans are messy, conflicted creatures. Was it hypocritical? Sure. But I think it was the kind of hypocrisy almost everybody is guilty of, applying a different standard to the people we love and trust than we'd apply to strangers. She ultimately apologized for saying anything and pulled back from the whole mess, which I thought was the right call. People keep using it as evidence that she's just worthless, but I respected her for owning her mistake and knowing when to shut up.
I don't even know why this is news. This happens to women all the time. I really wish people would stop giving her a platform to speak from.
It happens to women all the time, but nobody really talks about it, so her talking about it is news. I don't think it's right for her to be seen as the voice of her generation, but I think it's good she's out there as a voice, even with her flaws.
posted by Ursula Hitler at 7:17 PM on February 15, 2018 [30 favorites]
It happens to women all the time, but nobody really talks about it...
I've been on the web for 24 years now and know plenty of women (myself included) who talk about it.
It doesn't get mediatized, yes. But there are plenty of individual women who talk about it.
posted by fraula at 2:17 AM on February 16, 2018 [1 favorite]
I've been on the web for 24 years now and know plenty of women (myself included) who talk about it.
It doesn't get mediatized, yes. But there are plenty of individual women who talk about it.
posted by fraula at 2:17 AM on February 16, 2018 [1 favorite]
Mod note: Maybe let's just let this be a thread about endometriosis and hysterectomy and experiences both personal and societal surrounding those issues and leave the Dunham-specific back-and-forth for a context where it's more on point. Totally okay to have whatever issues with Dunham, but basics have been been stated here and I think we can leave it at that.
posted by cortex (staff) at 7:10 AM on February 16, 2018 [4 favorites]
posted by cortex (staff) at 7:10 AM on February 16, 2018 [4 favorites]
I take a sort of perverse pleasure in answering "When was your last menstrual period" with a big, smiley "April, 2005!"
I also haven't had a period since I was about 28. My health insurance doesn't know how to categorize it since I've never had a hysterectomy and at least until recently, I haven't been actively menopausal in terms of hormones, so it's always a bit of a drama in intake. Ugh.
posted by Sophie1 at 7:15 AM on February 16, 2018 [1 favorite]
I also haven't had a period since I was about 28. My health insurance doesn't know how to categorize it since I've never had a hysterectomy and at least until recently, I haven't been actively menopausal in terms of hormones, so it's always a bit of a drama in intake. Ugh.
posted by Sophie1 at 7:15 AM on February 16, 2018 [1 favorite]
What kind of care would she have gotten if she weren't Lena Dunham? Meaning how are normal women with normal insurance with endometriosis treated?
posted by elsietheeel at 7:47 AM on February 16, 2018
posted by elsietheeel at 7:47 AM on February 16, 2018
She describes going into the hospital and refusing to leave until they took her uterus (12 days later).
I think that describes power, time and financial resources that most people don't have. I can't imagine getting away with that, for many reasons, and I'm pretty privileged already.
posted by Dashy at 8:16 AM on February 16, 2018 [8 favorites]
I think that describes power, time and financial resources that most people don't have. I can't imagine getting away with that, for many reasons, and I'm pretty privileged already.
posted by Dashy at 8:16 AM on February 16, 2018 [8 favorites]
That response from an endometriosis expert that jenfullmoon posted is just... so patronising that it feels almost illustrative of the problems that people have had with medical professionals. Dunham was very well informed, and even says in the article that she knows that this won't necessarily solve the problem.
And there's parts in Dunham's article - like her description of her uterus makes it clear that she had a bicornate uterus. It's diagnosable by ultrasound. Which means that she had 40 ultrasounds which either missed this pretty major thing, or chose not to tell her.
posted by Vortisaur at 8:51 AM on February 16, 2018 [4 favorites]
And there's parts in Dunham's article - like her description of her uterus makes it clear that she had a bicornate uterus. It's diagnosable by ultrasound. Which means that she had 40 ultrasounds which either missed this pretty major thing, or chose not to tell her.
posted by Vortisaur at 8:51 AM on February 16, 2018 [4 favorites]
Of course it was a choice, it's always a choice. And the fact that hysterectomy without oophorectomy has a 62% chance of endometriosis recurrence is probably why it took 12 days and lots of hoops for her doctors to agree to it.
One of the closest people to me in my life has struggled with endometriosis for decades and I have watched her go through her own sort of medical hell and I understand wanting to do anything, even something radical, to ease the pain. But we also have to be careful about these sorts of articles, which will now likely cause many people suffering endometriosis to demand this procedure despite its relative lack of efficacy. Medicine is just not as advanced as most people think or want it to be, and if we've learned any big lessons from the past 60 years of medicine it's that being conservative, especially when it comes to things like organ removal, is usually the better bet.
posted by Lutoslawski at 10:47 AM on February 16, 2018
One of the closest people to me in my life has struggled with endometriosis for decades and I have watched her go through her own sort of medical hell and I understand wanting to do anything, even something radical, to ease the pain. But we also have to be careful about these sorts of articles, which will now likely cause many people suffering endometriosis to demand this procedure despite its relative lack of efficacy. Medicine is just not as advanced as most people think or want it to be, and if we've learned any big lessons from the past 60 years of medicine it's that being conservative, especially when it comes to things like organ removal, is usually the better bet.
posted by Lutoslawski at 10:47 AM on February 16, 2018
Tell that to the 38% who didn't have recurrent problems. Or the 62% who might have felt that the period of time they had before recurrence was worth it.
I would not be that glib if we didn't know beyond question that doctors discount women's pain and that if this was any other non-childbearing-related organ they'd agree to removal sooner. When we reach the point that medicine uses the same value-neutral judgment towards uterine removal as they are about the appendix and gall bladder I'll give that 38% less weight.
And that's before we consider the pros and cons of longitudinal research like that.
posted by phearlez at 11:51 AM on February 16, 2018 [3 favorites]
I would not be that glib if we didn't know beyond question that doctors discount women's pain and that if this was any other non-childbearing-related organ they'd agree to removal sooner. When we reach the point that medicine uses the same value-neutral judgment towards uterine removal as they are about the appendix and gall bladder I'll give that 38% less weight.
And that's before we consider the pros and cons of longitudinal research like that.
posted by phearlez at 11:51 AM on February 16, 2018 [3 favorites]
When we reach the point that medicine uses the same value-neutral judgment towards uterine removal as they are about the appendix
Oh, so this was neat - when I went to the ER back in 2011 and they did an exploratory surgery to try to find the source of my excruciating pain, the surgeon took out my perfectly healthy appendix while "cleaning up" the remnants of an chicken egg sized burst ovarian cyst. I had a long, well documented history of endometrial ovarian cysts on my right ovary, cysts that would grow so large that they would rupture, but instead of removing my ovary, he removed my, again, perfectly healthy appendix, "because (they) were already in there."
posted by Ruki at 1:02 PM on February 16, 2018 [8 favorites]
Oh, so this was neat - when I went to the ER back in 2011 and they did an exploratory surgery to try to find the source of my excruciating pain, the surgeon took out my perfectly healthy appendix while "cleaning up" the remnants of an chicken egg sized burst ovarian cyst. I had a long, well documented history of endometrial ovarian cysts on my right ovary, cysts that would grow so large that they would rupture, but instead of removing my ovary, he removed my, again, perfectly healthy appendix, "because (they) were already in there."
posted by Ruki at 1:02 PM on February 16, 2018 [8 favorites]
But we also have to be careful about these sorts of articles, which will now likely cause many people suffering endometriosis to demand this procedure despite its relative lack of efficacy. Medicine is just not as advanced as most people think or want it to be, and if we've learned any big lessons from the past 60 years of medicine it's that being conservative, especially when it comes to things like organ removal, is usually the better bet.
First, this has the reek of paternalism about it. Second... it's funny how medicine can advance far enough to give impotent men erections, or to replace a woman's cancerous breasts with big bouncy fake ones that still attract men, and it's capable of rebuilding bodies destroyed by sport and war, but it's a bridge too far to expect medicine to be able to address a woman's physical pain. It's also funny that taking steps to be rid of the pain permanently is seen as something dangerous and unreasonable. I mean, funny in the bitterly laughing so I don't throw up kind of way.
posted by palomar at 1:19 PM on February 16, 2018 [23 favorites]
First, this has the reek of paternalism about it. Second... it's funny how medicine can advance far enough to give impotent men erections, or to replace a woman's cancerous breasts with big bouncy fake ones that still attract men, and it's capable of rebuilding bodies destroyed by sport and war, but it's a bridge too far to expect medicine to be able to address a woman's physical pain. It's also funny that taking steps to be rid of the pain permanently is seen as something dangerous and unreasonable. I mean, funny in the bitterly laughing so I don't throw up kind of way.
posted by palomar at 1:19 PM on February 16, 2018 [23 favorites]
he removed my, again, perfectly healthy appendix, "because (they) were already in there."
I mean, on the one hand I wouldn't mind this because the appendix is a useless organ and then I'd never have to worry about appendicitis, but on the other hand, if it was perfectly healthy, don't they have to get consent for that sort of thing first?
I was in the dentist's chair on Tuesday and they had to turn a filling into a root canal and they had to get consent FROM MY MOM even though I gave consent right then and there because I was technically under conscious IV sedation (but it had mostly worn off at that point and I don't get super sedated anyway).
posted by elsietheeel at 1:30 PM on February 16, 2018 [2 favorites]
I mean, on the one hand I wouldn't mind this because the appendix is a useless organ and then I'd never have to worry about appendicitis, but on the other hand, if it was perfectly healthy, don't they have to get consent for that sort of thing first?
I was in the dentist's chair on Tuesday and they had to turn a filling into a root canal and they had to get consent FROM MY MOM even though I gave consent right then and there because I was technically under conscious IV sedation (but it had mostly worn off at that point and I don't get super sedated anyway).
posted by elsietheeel at 1:30 PM on February 16, 2018 [2 favorites]
I requested they remove my appendix during my endometriosis surgery. I already had my gallbladder out and didn't want abdominal surgery again. My surgeon said it was routinely done during the endo surgery because it eliminated the need for a possible future surgery and they sometimes find endo ON the appendix. It's a good think he examined it and took it. It had a very small blister and showed signs of early acute appendicitis under the scope. I don't know how long it was a problem or how long it would be until it would have been an ER situation but I had pain in my lower right side for a long time.
My gallbladder also "looked healthy" and tested in an okay zone until they got it under the scope - I had excruciating gallbladder pain. Abdominal pain and organs are weird. I'd rather eliminated all possible sources of the pain. My surgeon also drained "normal" cysts JUST IN CASE they are a cause of pain.
I've been in that desperate place where I just wanted an organ fucking gone. I've highly considered a partial hysterectomy with resection myself when I was in excruciating pain because at least I wouldn't have such painful cramps. (I'm not having kid.) And again, the lack of education concerns me so much about this. Because I wonder when people have had good doctors, good tests, good treatment before doing something that at the very least is a long recovery and can affect longerm health.
But unless you've BEEN there, been desperate to do SOMETHING, followed a doctor because you trust them, then I think it's harsh to judge the PERSON. I judge the doctors, the medical system, the lack of education.
posted by Crystalinne at 1:54 PM on February 16, 2018 [4 favorites]
My gallbladder also "looked healthy" and tested in an okay zone until they got it under the scope - I had excruciating gallbladder pain. Abdominal pain and organs are weird. I'd rather eliminated all possible sources of the pain. My surgeon also drained "normal" cysts JUST IN CASE they are a cause of pain.
I've been in that desperate place where I just wanted an organ fucking gone. I've highly considered a partial hysterectomy with resection myself when I was in excruciating pain because at least I wouldn't have such painful cramps. (I'm not having kid.) And again, the lack of education concerns me so much about this. Because I wonder when people have had good doctors, good tests, good treatment before doing something that at the very least is a long recovery and can affect longerm health.
But unless you've BEEN there, been desperate to do SOMETHING, followed a doctor because you trust them, then I think it's harsh to judge the PERSON. I judge the doctors, the medical system, the lack of education.
posted by Crystalinne at 1:54 PM on February 16, 2018 [4 favorites]
I think they did get consent, either from me when I was on IV Dilaudid or from my dad, but I just remember being very surprised post-surgery that they removed a healthy organ instead of the one that was, you know, actually causing my pain. And yeah, it is nice knowing that I never have to worry about appendicitis but the downside of that is that only reason I got the exploratory surgery in the first place is because they were worried they had missed something about my appendix and didn't want to be liable if my appendix burst in a few days. Going back to the same hospital for the same issue sans appendix has been an entirely different experience. The last time, the ultrasound showed the cyst actively hemorrhaging and I got a shot of demerol and told to take some Alleve.
On preview: I totally understand WHY they took the appendix, in terms of preventing a possible future surgery, but my point is, the same could be said about my right ovary. They could have removed that at the same time and prevented a possibly future surgery when a future cyst became so large it caused ovarian torsion.
posted by Ruki at 2:11 PM on February 16, 2018 [2 favorites]
On preview: I totally understand WHY they took the appendix, in terms of preventing a possible future surgery, but my point is, the same could be said about my right ovary. They could have removed that at the same time and prevented a possibly future surgery when a future cyst became so large it caused ovarian torsion.
posted by Ruki at 2:11 PM on February 16, 2018 [2 favorites]
What kind of care would she have gotten if she weren't Lena Dunham? Meaning how are normal women with normal insurance with endometriosis treated?
From my experience and collection of anecdotes? Wildly mixed.
The first OB/GYN who saw me in the ER Said he had ruled out STD's via blood tests, and then informed me (Informed! Not suggested or requested!) that I was scheduled for a radical hysterectomy/oophorectomy in the morning No tests, no scans no nothing. I was a little worried about major surgery if we weren't sure it was necessary ( his words) and he blew up. "You should be THANKING me!!! No woman over 20 needs to be hanging on to her uterus anyway! And your insurance company will thank me for doing it instead of some overpriced New York doctor!"
Asking for a second opinion and a different doctor was one of the best things I ever did.
posted by The Underpants Monster at 2:38 PM on February 16, 2018 [7 favorites]
From my experience and collection of anecdotes? Wildly mixed.
The first OB/GYN who saw me in the ER Said he had ruled out STD's via blood tests, and then informed me (Informed! Not suggested or requested!) that I was scheduled for a radical hysterectomy/oophorectomy in the morning No tests, no scans no nothing. I was a little worried about major surgery if we weren't sure it was necessary ( his words) and he blew up. "You should be THANKING me!!! No woman over 20 needs to be hanging on to her uterus anyway! And your insurance company will thank me for doing it instead of some overpriced New York doctor!"
Asking for a second opinion and a different doctor was one of the best things I ever did.
posted by The Underpants Monster at 2:38 PM on February 16, 2018 [7 favorites]
"No woman over 20 needs to be hanging on to her uterus anyway! "
Was ... was he a member of a cult where girls get married at 14 and pop out six kids before they turn 20? Or does he ... not know where babies come from?
posted by Eyebrows McGee at 3:12 PM on February 16, 2018 [12 favorites]
Was ... was he a member of a cult where girls get married at 14 and pop out six kids before they turn 20? Or does he ... not know where babies come from?
posted by Eyebrows McGee at 3:12 PM on February 16, 2018 [12 favorites]
A friend is in the middle of this and apart from the obvious pain she is dealing with, there are so many other layers of identity and dreams.
I'm past menopause and trying to tell her it will be OK, but I also have two kids, and I'm both content with aloneness and aware that guys who like me are not planning families. I don't think her boyfriend wants children at all either, but there is this insecurity that is crazy-making when you are that age.
On doctors: last year, I had a cancer scare. At that point I wasn't really sure if I had reached menopause, and there was extreme pain and bleeding. The surgeon who examined me did a curettage with no prior warning and no anesthesia, I guess she thought she might as well get it all over with right away (there was a huge cyst, but nothing bad beyond that). It hurt more than giving birth. She was all, pull yourself together lady. I guess even women doctors have little respect for women's pain. The nurse was scared, though, and I think she reported the incident, because when I came for the follow-up the head of department was there and everyone was very worried about my feelings. TBH, at that point I was just happy to be pain-free. So I can so much follow what people with endometriosis are about.
posted by mumimor at 4:55 PM on February 16, 2018 [5 favorites]
I'm past menopause and trying to tell her it will be OK, but I also have two kids, and I'm both content with aloneness and aware that guys who like me are not planning families. I don't think her boyfriend wants children at all either, but there is this insecurity that is crazy-making when you are that age.
On doctors: last year, I had a cancer scare. At that point I wasn't really sure if I had reached menopause, and there was extreme pain and bleeding. The surgeon who examined me did a curettage with no prior warning and no anesthesia, I guess she thought she might as well get it all over with right away (there was a huge cyst, but nothing bad beyond that). It hurt more than giving birth. She was all, pull yourself together lady. I guess even women doctors have little respect for women's pain. The nurse was scared, though, and I think she reported the incident, because when I came for the follow-up the head of department was there and everyone was very worried about my feelings. TBH, at that point I was just happy to be pain-free. So I can so much follow what people with endometriosis are about.
posted by mumimor at 4:55 PM on February 16, 2018 [5 favorites]
It doesn't get mediatized, yes. But there are plenty of individual women who talk about it.
Very clumsy phrasing on my part, to say "nobody" was talking about it. I mostly meant it's not discussed enough in the media, although a certain amount of squeamishness and (entirely undeserved) shame may sometimes prevent people from talking about it in their daily lives too.
posted by Ursula Hitler at 5:47 PM on February 16, 2018 [1 favorite]
Very clumsy phrasing on my part, to say "nobody" was talking about it. I mostly meant it's not discussed enough in the media, although a certain amount of squeamishness and (entirely undeserved) shame may sometimes prevent people from talking about it in their daily lives too.
posted by Ursula Hitler at 5:47 PM on February 16, 2018 [1 favorite]
I thought the article was very well written and it brought me an awareness of endometriosis that I didn't have despite reading many accounts. something about the description of the removed uterus and the recounting of the process really struck me
posted by biggreenplant at 7:10 AM on February 17, 2018
posted by biggreenplant at 7:10 AM on February 17, 2018
Was ... was he a member of a cult where girls get married at 14 and pop out six kids before they turn 20? Or does he ... not know where babies come from?
I didn't spend much time investigating his particular branch of nutjobbery as long as I knew he wasn't getting his scalpel near my ladybits.
After I'd made the official request for a new doctor, one of the nurses did say she was really relieved, even though she couldn't say anything while he was there. She said, "Everybody's afraid of him. He got his medical training in the Israeli Army." For a long time, my sister and I had a running joke about the Mossad's Crack Hysterectomy Unit.
posted by The Underpants Monster at 11:33 AM on February 17, 2018 [8 favorites]
I didn't spend much time investigating his particular branch of nutjobbery as long as I knew he wasn't getting his scalpel near my ladybits.
After I'd made the official request for a new doctor, one of the nurses did say she was really relieved, even though she couldn't say anything while he was there. She said, "Everybody's afraid of him. He got his medical training in the Israeli Army." For a long time, my sister and I had a running joke about the Mossad's Crack Hysterectomy Unit.
posted by The Underpants Monster at 11:33 AM on February 17, 2018 [8 favorites]
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