Fatigue and intermittent pain are still my companions
September 28, 2015 9:43 PM   Subscribe

"We now know that endometriosis is an equal-opportunity disease. Girls can have it, grannies can have it. It is necessary for doctors not to pre-judge, but to look at and listen to their patients: to exercise those old-fashioned lo-tech skills, and refrain - please - from the routine humiliations meted out to women with gynaecological disease. The injured self you take away from your consultation is the self you take home. Suffering may not be avoidable, but stigma is under social control." —Hilary Mantel on endometriosis in The Guardian posted by Athanassiel (27 comments total) 33 users marked this as a favorite
as a woman w/chronic debilitating illness, this piece had a familiarity that made me cry.
posted by JBD at 10:36 PM on September 28, 2015

The more we talk about how the medical system utterly fails women and other oppressed groups and how much it upholds and reinforces existing hierarchies the angrier I get. Hopefully with enough anger change will come.
posted by Phire at 11:05 PM on September 28, 2015 [9 favorites]

The medical system often fails everyone, except perhaps those rich and/or privileged enough to either be taken seriously or pay for "unnecessary" tests out of pocket until the actual problem is found.

Any disease that isn't immediately obvious with a physical exam and perhaps some imaging are incredibly difficult to diagnose, sometimes because symptoms are dismissed, sometimes because doctors just aren't aware of a lot of the low frequency diseases and/or atypical presentations.

Sadly, women and minorities get it the worst, since they also often suffer from a lack of research into diseases that solely or primarily affect them. That's in addition to being dismissed as a crank, drug-seeker, or hypochondriac, which happens to people of all races, genders, and classes.
posted by wierdo at 11:13 PM on September 28, 2015 [7 favorites]

Saying "the medical system fails everyone" sounds a lot like "all lives matter". It isn't always helpful to broaden the topic that way.
posted by the agents of KAOS at 11:16 PM on September 28, 2015 [44 favorites]

I thought it was significant that Mantel points out that although women with endometriosis have been dismissed and/or treated as frivolous, it was women of colour and poor women who were being misdiagnosed. You are only allowed to have health issues if you can pay for them or you are white enough to be taken seriously.
posted by Athanassiel at 11:18 PM on September 28, 2015 [10 favorites]

but had dismissed it in my own head and by others because the pain was seen as normal. Was the level of pain I was experiencing norm

Mine wasn't endometriosis but is something else that has since been diagnosed through imaging, but I want to say SAME. I tried to explain to my gyn and to my doc how concerned and debilitated I felt by how heavily I was bleeding, how long my periods were lasting, how the pain was keeping me from being able to get out of bed, how much Aleve I was having to take. She seemed so skeptical that it was actually a problem that it made me second guess myself and think, Wait, am I just some weak person with a low pain threshold? Maybe it's depression and anxiety and all In my head? And I'd spend so much time trying to figure out how other women were doing it and pushing through the pain and heavy heavy bleeding. Was I just a big baby?

Turns out she's just herself shrug and I have a new doc.
posted by discopolo at 1:58 AM on September 29, 2015 [5 favorites]

Something that blew my mind recently was learning that heart attack symptoms can present really differently in women, and this means that they're likely to be missed - both by the person experiencing them and by the medical professionals treating them.

We've managed to sell one particular heart attack narrative, both to doctors and to the general public, and it happens to be wrong a lot of the time for half of the population. I will happily shout this in the face of anyone who tries to tell me that the patriarchy isn't a thing. We fail up to half of all people because the mental model, the medical model and the scientific model all use a man as the default person.

I'm also reminded of this great comment on Gardasil and vaccination testing. Research subjects are primarily men. More evidence that there's a default person, medically speaking, and it's a man.

Having issues with a condition/some medication? A condition that's understood based on research in men and treated using drugs tested on men? Even though there are documented biological and hormonal differences between your body and the body of medicine's default person(man)? Eh, not a lot we can do.

Something wrong with parts of your anatomy that the default human doesn't come equipped with? 1. Stop grossing us out with your gross woman stuff. 2. Shut up. 3. You're making it up. 4. Shut up. 5. That much pain/blood/discomfort is totally normal, have you tried shutting up? Find me a woman who hasn't received dismissive or sub-standard medical care at some point and I'll eat my own damn clots.

It creates a medical expectation that male is somehow "normal" and female somehow "different" (as is anything that doesn't fit neatly into one of those boxes), and that expectation has been fed in turn by centuries of patriarchy, and I am so fucking sick of being a second-class person in a whole ton of ways that a lot of people refuse to acknowledge and don't even believe exist because of the luck of the chromosome draw.

It sucks.
posted by terretu at 2:51 AM on September 29, 2015 [46 favorites]

Something that blew my mind recently was learning that heart attack symptoms can present really differently in women, and this means that they're likely to be missed

Sleep apnea, too. Women with sleep apnea are much less likely to be diagnosed because the standard sleep apnea patient is a man, and because women present differently -- men get sleepy, fall asleep at the wheel, and have partners complaining of snoring. Women are apparently much more likely to present with fatigue, aches, morning headaches, and insomnia. (For example.)
posted by pie ninja at 4:07 AM on September 29, 2015 [8 favorites]

pie ninja - OMG, perhaps sleep apnea is my problem. I sleep more than average and am usually tired. And I have insomnia - running on 7 years now I've been getting up in the middle of the night for a couple of hours. Maybe I'll have that insanely expensive sleep study done after all.
posted by Measured Out my Life in Coffeespoons at 5:51 AM on September 29, 2015 [1 favorite]

We've managed to sell one particular heart attack narrative, both to doctors and to the general public, and it happens to be wrong a lot of the time for half of the population. I will happily shout this in the face of anyone who tries to tell me that the patriarchy isn't a thing. We fail up to half of all people because the mental model, the medical model and the scientific model all use a man as the default person.

Don't forget the media model. A contributing factor to this is that women are very rarely shown on TV having heart attacks, partly because they're rarely the narrative drivers and partly because if they then had to rip their shirts open to perform resus, the awful truth of breasts could become visible before 9pm.
posted by bonaldi at 5:54 AM on September 29, 2015 [26 favorites]

I love Mantel's books, and this essay was moving. I knew her only from her writing, and had no idea about any of her health issues or anything beyond her amazing novels.

My new doctor even though she knows my history is unwilling to look into it further and has asked me to just accept it as is.

We had to fire a long sequence of doctors, both general practitioners and specialists, just to get to those who would listen and believe her. Without listening and believing, you can't get to a diagnosis, much less treatment, and it was so incredibly angering and frustrating to have her pain and symptoms dismissed and disbelieved to her face.

That is why I started going along to all of the appointments -- if there was any hint of dismissal, I applied the full white-guy credibility and pressure that no, in fact, this was happening and this was important. Without that I'm not sure she ever would have been treated seriously or ever gotten the right diagnosis and treatment. The whole situation was so incredibly wrong that it was hard to really believe, even while it was happening.
posted by Dip Flash at 6:01 AM on September 29, 2015 [5 favorites]

On the endometriosis front, I know Allie Brosh (Hyperbole and a Half) discussed her surgery for endo in several of her interviews for her first book, including this one. I don't remember if she confirmed that what happened in this story was due to her endo but it seems likely.

On the sleep disorder and gender front, there's also the whole situation re: sleep apnea vs. sleep-disordered breathing (as a category that includes sleep apnea and upper airway resistance syndrome) -- upper airway resistance is much more common in women but is not diagnosed by a lot of doctors. Many don't believe in it.

Coffeespoons: They may also be willing to do a home sleep study -- they're more sensitive now, and generally cheaper than the in-lab. They have you come in to their office in the evening to pick up/be fitted with the equipment and then you go home, sleep in the equipment, and return it in the morning. (The downside is that they don't test for other sleep disorders and they may miss mild cases.)
posted by pie ninja at 6:09 AM on September 29, 2015 [2 favorites]

I'm in the midst of a possible diagnosis with endometriosis and I'm terrified. At a minimum I lose 1 week every month from the pain and nausea. And while it's heartening to be closer to finding out what's actually wrong, I don't quite know how I'm supposed to continue to function in a job or hobbies when there's no definite treatment or way to manage it. I've found myself turning down opportunities that were once what I would consider my dream job/project, because I don't want to let anyone down - it doesn't always happen, but I've had to back out of commitments because of the pain and it just adds to the self-loathing over having a broken body.
posted by A hidden well at 7:38 AM on September 29, 2015 [2 favorites]

I tend to be something of an admitted hypochondriac--as evidenced by my extensive history of depression and anxiety--but even so when there was a CBC radio news story about how often heart attack symptoms in women are routinely missed or not taken seriously because DUH IT IS THE SAME AS DUDES AMIRITE, I wanted to scream. My husband still believes that those symptoms are the same as men's despite me showing him evidence to the contrary (and as well as an emerg doctor telling him when I went in for chest pains last year).

I finally got a family doctor (after waiting for nearly a year and a half) and oh boy, I am hoping she doesn't suck and will listen to me.
posted by Kitteh at 8:07 AM on September 29, 2015

I wrote on my blog awhile back about how I have a fantasy of being on vacation in a Scandinavian country when my period strikes.

(In reality, what happens when I go to a doctor about this is that I get referred for an ultrasound and they don't find anything and then they tell me to take some birth control pills and then I go crazy for awhile until I stop taking the pills and then they say I am just going to have to live with it. Every. single. time. Always. For the last twenty-plus years, no matter who I see or how sympathetic they seem at the beginning.)
posted by brina at 8:41 AM on September 29, 2015

I'm glad this got posted! This is maybe the best roundup of endometriosis basics I've seen. I sent it to both my parents, too.

"This year the pain has come back as well as all the associated symptoms. Not as bad but enough to know that something is up. Again, the ultrasound has revealed nothing. My new doctor even though she knows my history is unwilling to look into it further and has asked me to just accept it as is."

This is unacceptable. Endo very often will not show up on an ultrasound (my doctor was surprised at my last one that she could see some), and it's shitty, but accepted, that people will require multiple surgeries as the endo comes back. I hope you can find a doctor who knows these things and will take you seriously.

A hidden well:
I'm sorry to hear that you've been feeling poorly. I know a diagnosis is terrifying. And I have had to give up some things I love and I know I've been less successful career-wise than I might have been otherwise. But: I have gotten some effective treatment. I am in a pain management program and I can take care of daily activities most of the time; I live alone; I manage to keep my full-time job. Don't give up asking for the care you need. It has been hard and required a lot of pressure, but I'm managing to keep it together now.

I too have issues with birth control pills. In my case, we found that they exacerbated a known mental illness. After a LOT of trial and error I have managed to find meds that work for my mental health AND a BCP that I'm able to tolerate, that almost completely suppresses my periods. So...it might be possible for you, just very very difficult. And I couldn't do it without health insurance. I wish there was more to offer than hormonal birth control. It's ridiculous that there isn't.
posted by fiercecupcake at 9:08 AM on September 29, 2015 [3 favorites]

Also, and I always say this, but: 1 in 10 seems way too low. I know so many people with endometriosis.

I tag all my shit online about it with #endobullshit . It makes me feel a little better both to gripe, and to find people who are having a really hard day and leave them some encouragement.

<3 all y'all.
posted by fiercecupcake at 9:09 AM on September 29, 2015 [2 favorites]

OK, one more thing.

The insidious thing about endometriosis is about how it can change every second of your life every day. I wake up, and the background pain is pretty much taken care of by the pain patch I wear, but I still feel it. I used to run, bike, or do yoga every day; now I walk on the treadmill, and I have to very carefully inch up my pace or grade lest I make the endo angry. I take a handful of pills at morning and night, and in between, take ones that make me sleepy or forgetful. If I forget my birth control pill -- never mind that my partner has a vasectomy -- I may spot for weeks, or may even have a period that sets off a flare that lasts a month. I have doctor's appointments all the goddamn time; for awhile, I was doing pelvic floor physical therapy once a week, and that's stressful and embarrassing and expensive. I have a GI appointment next week, because my gyn doesn't think all my daily pain could be from endo. I am still paying off the laparoscopy I had in March of 2014, and have been told to consider a hysterectomy or another lap, though since I have endo throughout my abdomen it's unclear how much relief a hyst could give me.

Two years ago I had a pretty normal life. Now I have endo bullshit.
posted by fiercecupcake at 9:17 AM on September 29, 2015 [3 favorites]

Further on this point, stuff like this isn't even taught to EMTs and doctors. They literally get taught from cis-normative, heterosexual, white materials, as presented by the same. It's an enormous systemic problem, and like terretu, I'm so fucking sick of it. Just yesterday I had to teach my doctor about how hormones function because she had no clue.

I don't mean to "not all doctors" this situation at all -- which is personally horrifying to me -- but as a medical student I can happily report to you that we are absolutely taught this information at my school. The turnover from 'previous generation' doctors who may have never heard of it to fresh young whippersnappers can be slow, but it's not something that medical schools are ignoring.

Furthermore, our faculty (the ones who care about teaching it) are part of that previous generation, so it's not a simple matter of old doctors = bad and young doctors = good. It's a change of mindset that is slowly percolating through the medical establishment. We can talk about how to make that change happen more quickly, but I don't think it's productive to assert that it isn't being taught at all.
posted by telegraph at 9:23 AM on September 29, 2015 [1 favorite]

I have suspected endometriosis. I say suspected because my GYN won't do a lap to find out or to eradicate it. I've been to other docs and here has been my experience:

A) My gyn: "Yes, it appears your ovary wraps behind your uterus and is stuck there. Adhesions usually means endo. Your symptoms do point to endo. But with surgery, endo comes back. Let's just control your periods until menopause kicks in."

B) Respected endo expert gyn: "Well if you have pain it's probably due to pelvic congestion. We can cut the nerves. And while we are in there, anything else you want eradicated we can do--want your tubes tied? Then we can put you on danzol."

C) Expert in pelvic floor issues/urinary issues after giving birth: "Endo??? Ovary wrapped behind your uterus??? Pffttt that's not possible. Everyone wants to blame endo. Well everyone has endo. Everyone has adhesions, etc. They just want to get in there and clean it out. It's just part of life. All pain stems from the back and these pelvic floor muscles."

So that's been my experience. I've been in such pain from the adhesions and cysts that come and go (I don't have PCOS) that I pray for a hysterectomy. When I can't walk, sit, go to the bathroom and it feels like I have an ovarian torsion and am sent to the ER to get morphine---that isn't "your ovary is NOT wrapped behind your uterus" bullshit. That IS something majorly messed up so that's why I'm in pain.

I'm perimenopausal so now my periods on birth control--while regular--are heavy. When I was younger, I had cramps equal to labor and hemorrhaging. Only birth control pills from 25-35 helped that. Then I had my kid and things went back to being a mess without birth control.

Yes, endo comes back after elimination. But it would have been nice for someone to break up the adhesions so it doesn't feel like something is being ripped up in side of me everytime I moved.
posted by stormpooper at 9:34 AM on September 29, 2015 [4 favorites]

I just finished reading about half of the 900+ comments the Guardian published after it asked women for their stories, and though I knew endometriosis is a terrible disease, I didn't realize how truly beyond horrific it is for many of the women who suffer from it; several mention in passing that the pain of giving birth did not compare to the pain they experience regularly from endo, and several note that when they finally had exploratory surgery, doctors found their bowels, bladder, and uterus glued together into one indistinguishable mass by endometrial tissue -- like some ghastly, not quite malignant cancer that tortures its victims without even the release of death.

And there's something strange going on with the epidemiology of it, too:
Geoff Reid in Australia, one of the leading experts, believes the disease may be getting more aggressive. “I have been dealing with endometriosis for 25 years. I just don’t believe that 20 to 25 years ago we were missing the sort of people that we see today,” he said. “I see young women in their early 20s with dreadful colorectal endometriosis and I can’t believe we were missing that. We may have to some extent, but it is my observation over the years that the disease is becoming worse. You see some of the most pitiful people with this disease – it’s awful. People who specialise in endometriosis certainly share that view.”
posted by jamjam at 9:35 AM on September 29, 2015 [6 favorites]

But with surgery, endo comes back.

Yes, and you'll also continue to age, and maybe get other conditions, and death comes to us all. Even aspirin wears off eventually. Why treat anything? Good grief, "we're not willing to correct your pain at all because eventually it might come back" is an unacceptably cruel proposition.

I will say that endometriosis surgery cost me several thousand even with insurance, but three years almost pain-free was worth it. My life has value, my time has value; I was losing at least a week a month, so surgery has gotten back eight total months of my life so far.

I was lucky enough to have a GYN who took me seriously; the first time I tried to explain the pain he just said "come in when you have it and we'll check you out," which is absurd since I couldn't even stand when I had it. But the second time, especially when I said the magic words "endometriosis runs in my family," he got me in for an ultrasound right away and immediately referred me to a surgeon. But it took me ages to seek treatment because I would ask other women "is it normal for cramps to hurt so much you can't move or speak?" and they would invariably say "yeah, that sounds right to me." So many people are suffering silently.
posted by babelfish at 9:47 AM on September 29, 2015 [3 favorites]

I have tried to get my cats to perform surgery on me, but they won't. I've looked into setting up a DIY home menstrual extraction kit, but in the same way I look up trephination -- with the knowledge I'll never actually do it. Every month I ask my girlfriend if she'll just cut into me with any old kitchen knife, and every month she sadly refuses because she's a generative poet, not a medical doctor, and our kitchen knives aren't very sharp anyway.

So endometriosis comes back after a few years even with surgery, which by the way is technically diagnostic because you technically don't have endo unless you've already HAD the surgery which most health insurance won't even cover because diagnostic surgery is apparently a completely insane idea.

Cancer comes back too, and what do you do then? More surgery, or other treatments -- of which there are more every day, because we understand cancer is important. I'm not dissing cancer, but I AM saying that endometriosis is every bit as worthy of funding and attention and SURGERY. Surgery can cut it out. More surgery is often needed later on. But aren't we worth it?

For some reason it's like people* think that when our lady parts get infected we just need to live with it because of the curse and Eve and the snake.

Count me among those of us who would just have the whole kit torn out if we could. Every month for a week I feel like nothing but a rotting sack of reproductive impossibility, like God exists and is malevolent and hates women in general and me in particular, like I am being punished by the endometriosis, like there is literally nothing I could do to get it treated other than wound myself in the place where it happens so that a doctor literally HAS to look at it. Though I'm sure that claim would be denied also.

*not necessarily anyone here, but some people, particularly doctors I have encountered
posted by brina at 10:20 AM on September 29, 2015 [8 favorites]

So insidious, in fact, that I don't even think about these things anymore: I haven't worn pants in two years, because bloating. No pants. All dresses and skirts. Sometimes I think longingly about jeans, but I know I'd be too uncomfortable.

And no crossing my legs, because the physical therapist said that's a position that could tweak my pelvic floor issues.

Thanks, endo, you just keep taking and taking.
posted by fiercecupcake at 11:33 AM on September 29, 2015 [1 favorite]

It's obviously not foolproof but for me one of the best decisions I've made recently regarding healthcare was to find women doctors around my own age or younger. The difference in how seriously my health complaints are taken has been kind of shocking.

i'm going to have to change insurance providers within the next year or so and i'm fucking terrified of what life will be like when my choices become more limited.
posted by poffin boffin at 11:59 AM on September 29, 2015 [5 favorites]

After a LOT of trial and error I have managed to find meds that work for my mental health AND a BCP that I'm able to tolerate, that almost completely suppresses my periods.

I've never found anything more annoying than a nurse practitioner or doc or women friends being skeptical about my negative experiences with hormonal birth control. I'm glad Mirena works for you! I'm glad your life is better with NuvaRing. Guess what? It doesn't work for me. Yes, I've tried others. It's a nightmare. And then the NP goes,"Well, that's never happened to any of my other patients." There are explanations for that, but we don't know enough science yet to figure out exactly why. i mean, I'm not lying, lady.

It's like another place where I feel like they're implying I'm a big baby. I didn't realize that it being able to work through a migraine or nonstop bleeding for a month or feeling anxious and depressed were just things I was supposed to strong arm my way through. Just keep working through it, never mind if you vomit and feel nauseated and you're not able to do your best at work or school because you're waiting for it to work as promised. Good grief. That sure doesn't lead to lost $$$ and opportunity because you were trying to stop feeling very ill and you don't have any sick days or exuses left.

I don't usually get this upset, but I maxed out my Aleve and I'm feeling nauseated and I swear I can smell metal.
posted by discopolo at 3:23 PM on September 29, 2015 [4 favorites]

Endo definitely runs in families. I've heard that if you have a close relative with endo, your chance of having it yourself is sixfold. That matches with my experience -- my grandmother had what doctors even then recognised as unacceptable pain, and my mother, aunt and sister all have endo. My aunt in particular had endo so bad that her excised uterus ended up weighing over three kilos.

The chance I have it as well is quite high. A massage therapist in my teens actually said "did you know there's a ball of something right here? It's like your intestine is glued." Apparently it was the size of a cricket ball.

Have I been able to get a doctor to take me seriously?

Not in the slightest!
posted by E. Whitehall at 4:31 PM on September 29, 2015

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