the proof may be in the protein

February 20, 2014 10:03 AM

Approximately 176 million women and girls worldwide suffer from endometriosis; 8.5 million in North America alone. Associated costs of the disease are estimated to be a staggering $22 billion annually. The pain can be debilitating and infertility is a common outcome. Yet after decades of research, the jury is still out on what causes it, and many doctors still don't even know when they should be looking for it. Now, a group of researchers at MIT have taken a new approach, one with a characteristic engineering slant.
posted by Koko (26 comments total)

This new method sounds like something so (brilliantly) obvious I'm surprised it hasn't been tried before. How exciting, I hope the protein-key leads to better care, or perhaps even (knock on wood spit three times) a cure.
posted by dabitch at 10:25 AM on February 20, 2014 [2 favorites]

"In women with the disease, tissue that normally lines the uterus grows elsewhere in the body—for instance, on the ovaries, bladder, or bowel—often causing pain, infertility, or both. In early-stage cases, patients have small lesions, usually accompanied by inflammation; if the disease progresses, scar tissue may cause one organ to stick to another."

I must admit to being one of those people who "knew" what endometriosis was, but never really knew. Thanks for this link.
posted by psoas at 12:20 PM on February 20, 2014 [2 favorites]

Wow, this is really timely for me; I've just scheduled what will probably be my "first" laparoscopy, in that most women with endo have more than one, since the endo can always come back.

Researching endo has always been frustrating for me. There's no cure -- the physical excision or ablation of the tissue/adhesions can give people a reduction in symptoms for at least awhile. There's no test -- they diagnose you definitively through surgery. And besides treating the pain and putting you on hormonal birth control -- which many women can't take for one reason or another -- that's pretty much all they can do.

Thanks for posting this. It's good to know it's being worked on. I've heard numbers as high as 1 in 10 women having some endometriosis. It can wreck your life. I have symptoms most days these days and I'm sitting on a heating pad at work right now. It's a miserable waste of a lot of days.
posted by fiercecupcake at 12:50 PM on February 20, 2014 [10 favorites]

I have to think that early medicine's neglect of women's bodies and diseases (such as the textbooks that featured only male models, and of course all the drugs that only got tested on men) have meant that problems women suffer from that should have been looked at years ago are just now, slowly, starting to be addressed. I've had friends who suffered from this, I hope they find a good treatment/cure.
posted by emjaybee at 12:51 PM on February 20, 2014 [4 favorites]

fiercecupcake, I hope your lap helps you out for a bit, I've done a few. I'm doing really well these days actually, after nursing for two years (keep the menses at bay for nearly three). Not a tactic everyone can use, obviously but I'm one of those women who has a terrible time on hormonal birth control so my other options weren't very helpful at all.

It may be a combination of the neglect of women's bodies, combined with the lifestyle that meant our grandmothers were having children early (and often) while we are not, as well as the attitude "it's only your period stop whining" that women who have severe pain often meet when telling physicians. Either way, any step forward here is exciting as there are so many women who suffer from this. Too many, for too long. My grandmother had half her insides removed after it all "super glued together".

If we can transplant uteruses now and people are getting excited about the possibilities for trans women, you'd think it would be about time we could maybe fix the wee little issue with endometriosis that 176 million women are living with. It seems like such a simple problem, somehow. Ironically the "cure" most often offered is a hysterectomy (I was offered my first one when I was 27).
posted by dabitch at 1:04 PM on February 20, 2014 [2 favorites]

It seems to me that Science has been spinning its wheels on this subject for a really. long. time. Everything I've ever read about it says almost exactly the same thing. I find it really heartening to see a new perspective from a place like MIT. Go, eggheads, go!

Good luck, fiercecupcake ... I hope you're able to get some relief!
posted by Koko at 1:14 PM on February 20, 2014

Can someone post the paper? Looks like it might be this one.
posted by maryr at 1:16 PM on February 20, 2014

Here is a link to the full paper.
posted by ssri at 2:09 PM on February 20, 2014 [1 favorite]

Not really seeing the "characteristic engineering slant" here? Trying to unravel a disease by looking at signaling pathways and biomarkers that are different in sufferers than in the general population is not exactly a new idea. It's really the standard approach in clinical disease research, has been for decades. And saying that it's down to hormones and inflammation is a bit, um, unhelpfully general. Those are only two of the most complicated and poorly-understood networks in the human body. Lots and lots of Nobel prizes waiting to be won in those areas.
posted by Scientist at 2:12 PM on February 20, 2014 [4 favorites]

Not really seeing the "characteristic engineering slant" here?

I pulled that from the article:

"But the study is important because it shows the power of a new method now being used to probe a complex disease. The type of modelling championed by the M.I.T. group represents a move away from reductionism and toward an effort to 'embrace the complexity of biological systems,' Kevin Haigis, an expert in systems biology at Harvard Medical School, said. The researchers worked with tissues that came from patients, rather than cells cultured in a petri dish, meaning that they were able to probe how cells behaved in their native environment. They then used multivariate mathematical modelling to identify the group of signals correlated with the disorder. That analysis is what gives the work an engineering flavor, Haigis said. This method is especially well-suited to vexing problems like inflammation, which is a hallmark of many diseases. One of the best examples is endometriosis."

I ran with it, hoping it wasn't totally weak. Sounded good, anyway.
posted by Koko at 2:55 PM on February 20, 2014

I'll take it! I'm just happy someone is still working on it, to be honest. Done with the options of antiandrogen (that's a nice mustache you have there, miss) or GnRH agonists (menopause! Yeay! I'm so depressed. Is it hot in here?), I would really like to see some progress being made with this unsexy illness.

By the way, there's a million women's march against endo, worldwide, that takes place March 13, 2014.
posted by dabitch at 3:27 PM on February 20, 2014 [3 favorites]

The New Yorker article is kinda empty so I'm settling in to read the paper, but I'll stick up for MIT's BE department. In general, they do some pretty awesome multidisciplinary science/engineering.
posted by maryr at 3:38 PM on February 20, 2014

So for anybody keeping score, just more sensationalistic SCIENCE! journalism with no changes in prognosis, diagnosis, or treatment. I don't know why I ever expect it to be different.
posted by hobo gitano de queretaro at 3:48 PM on February 20, 2014

Because the last thing to abandon a person, is hope?

But I hear you. So much progress made in so many medical things, except this particular thing. We can transplant pig hearts into humans and make deaf people hear, swap out bits of eye and add robotic arms to amputees. This nut is a harder one to crack. Or less important. Whichever.

Oh, and it's one in eight women who suffer, by the way.
posted by dabitch at 4:22 PM on February 20, 2014 [1 favorite]

fiercecupcake, I hope your lap helps you out for a bit, I've done a few. I'm doing really well these days actually, after nursing for two years (keep the menses at bay for nearly three). Not a tactic everyone can use, obviously but I'm one of those women who has a terrible time on hormonal birth control so my other options weren't very helpful at all. - dabitch

Six years without a period due to Implanon, nine months of periods prior to conception, lactational menorrhoea for 11 months after that, nursed for another 24 months and in the 12 months after that my period got steadily worse. So I got a Mirena which has lightened the blood flow, but I still sometimes get crippling* cramps, have random cramps through my entire cycle, the occasional horrifying clot/flood of blood, and no easing on the digestive complaints.

After 23 years of this, and endless rounds of 'go on hormonal birth control and stop having periods' I'm drawing up the courage to face another gyn and hope they aren't dismissive and give me that bullshit. Because I am done with this. I don't want to go through another round of 'delay and ignore' until it's something that damn near cripples me.

*It's amazing how much more seriously I am taken now when I talk about pain because I can claim natural birth/gallstones as a benchline. Before that? What would a lady know about pain...
posted by geek anachronism at 4:35 PM on February 20, 2014 [4 favorites]

So for anybody keeping score, just more sensationalistic SCIENCE! journalism with no changes in prognosis, diagnosis, or treatment.

A-yup, that's what most scientific discoveries look like initially. And in the case of medicine, lots of advances involve moving to "a higher percentage of cures than before", as opposed to "no-one cured to all sufferers cured". Additionally, not all things that are discovered in the lab turn out to be effective in people. But, it's the only thing we've got, so if you can't handle those facts you probably shouldn't read about medical research.
posted by benito.strauss at 4:48 PM on February 20, 2014

Yes, and I'm yet to be thoroughly convinced that they're not onto something here. And as far as I'm concerned, the fact that MIT and Harvard are even spending time on it at all, and the New Yorker is reporting it, is a giant leap forward. I still think this is pretty damn good news.
posted by Koko at 7:52 PM on February 20, 2014 [1 favorite]

The other nice thing about this is that it's a woman researcher who's working on this. It'd be hard to prove that it was a cause in this specific case, but we're getting more women into science, and I think that leads to more of the problems that affect only women getting scientific attention. (Yes, men are concerned about these problems, because the women we care about can be affected, and just simple human sympathy. But you're just not going to be as attentive if you're not affected viscerally.)
posted by benito.strauss at 9:03 PM on February 20, 2014 [1 favorite]

"Affected viscerally" - I see what you did there.

I'm a bit disconcerted by the notion that biostatistics is suddenly considered characteristically engineering, but nice paper. The clinical classification systems for endometriosis are all pretty uninformative, so it'd be good to improve that, although I have my doubts about whether cytokine profiling of peritoneal aspirates is going to be widely enough adopted to benefit many patients. Pretty wild to end up collaborating with your surgeon.
posted by gingerest at 9:57 PM on February 20, 2014 [1 favorite]

I'm a bit disconcerted by the notion that biostatistics is suddenly considered characteristically engineering

See my comment above. My choice of words keep coming back to bite me ... I only meant that MIT is traditionally associated more with engineering than medical science; that combined with the mention in the article of the "multivariate mathematical modelling" giving the work an "engineering flavor" (which is beginning to leave a bitter taste in my mouth, LOL).
posted by Koko at 7:06 AM on February 21, 2014 [1 favorite]

Koko, quoting TFA regarding "engineering slant": "They then used multivariate mathematical modelling to identify the group of signals correlated with the disorder. That analysis is what gives the work an engineering flavor, Haigis said."

That's just a multiple regression analysis. It's one of the most basic and common statistical analyses in biology (and many other branches of science). There's nothing characteristic or unusual about it at all, it's just the standard way of looking at multiple potential independent variables (signaling molecules, i.e. hormones, in this case) and seeing which ones are most strongly correlated with your response variable (presence of endometriosis). Nothing special about that, that's just how we do things in science. Totally standard stuff.

The only reason that I can see why this article makes things seem interesting and unusual is that it uses a lot of non-standard and unnecessarily-convoluted terminology. If they'd said "we did a literature search to see what hormones might be associated with endometriosis, and then we did a regression of the levels of those hormones in two population groups one of which had the disease and one of which didn't. We found some that seem to have a significant correlation, and we think someone should follow this up to see if manipulating the levels of those hormones might have an effect on the disease. The ones with the strongest correlations appear to be involved in inflammation response, so that might have something to do with the mechanism of disease," then it would be really obvious that what they did was no different than what scientists are always doing, day in and day out.

This just seems way overblown to me. These people appear to be taking credit for doing some some worthy but utterly bog-standard clinical research by obfuscating their methods in a press release so that it sounds exciting and novel. If this wasn't MIT, chances are you'd never hear about it outside of an academic journal. Arguably, that's the proper format for this sort of thing anyway.
posted by Scientist at 11:04 AM on February 21, 2014

Reading all this it occurs to me that the prevalence and severity of endometriosis, together with the apparent agreement that retrograde flow of menstrual blood is a crucial event in the development of the disease, might constitute a pretty compelling argument against vaginal intercourse during one's period, because it makes engaging with a reciprocating piston which would seem to have the potential to pump menstrual blood back up into the abdomen at every stroke look like not such a good idea.
posted by jamjam at 1:56 PM on February 21, 2014

Then how come virgins have endometriosis?
posted by dabitch at 7:29 PM on February 21, 2014

Sorry, that may have been too snarky a response for the thread. I'll try again.

Since endometriosis has been found in the lungs, I think your piston-theory may be a little off. It also doesn't really explain how men with endo got it.
posted by dabitch at 8:52 PM on February 21, 2014

I made a suggestion (no more) that vaginal intercourse during one's period could facilitate menstrual blood being forced up into the abdomen, and relied upon the linked study for a statement to the effect that most researchers believe that's the primary way endometriosis begins.

As for virgins getting endometriosis, I might have thought that a moment's reflection would allow the average interested person to wonder whether a tighter than average, perhaps not fully developed cervix in a young girl at menarche could cause menstrual blood to back up into the abdomen.

Endo in the lungs could simply be a consequence of menstrual blood-- in the form of a small clot, perhaps-- being forced back into the blood vessels themselves and ending up in the lungs as clots so often do (remember those health warnings about never blowing into the vagina during oral sex because it could cause an embolism? the mechanism is similar).

In the case of the male with endo that you cited, did you bother to read your own link?

A review of the literature on endometriosis in the male reveals several cases which have occurred; the origin of which is though to be from the prostatic utricle which is a remnant of the uterus existing in the male

and I couldn't tell exactly what they were claiming about their subject in particular

There was delay in publication of this unusual case. The original plan was to await final confirmation of the exact pathologic nature of this condition; unfortunately this was never done since a postmortem examination was not performed.(ABSTRACT TRUNCATED AT 250 WORDS)

posted by jamjam at 9:51 PM on February 21, 2014

I'm familiar with the male cases, they've been on a form of estrogen for years, and I showed you that to point out that it seems to be the estrogen that's key in endo, not the menstruation since a male doesn't menstruate.

You can even find endometriosis in the brain, while this woman had a shunt, it doesn't say anything about shunts in the other two mentioned.
posted by dabitch at 8:52 AM on February 22, 2014