15 ms·

Endometriosis is an interesting disease

392 points by crescit_eundo 1y ago

twodave 1y ago
Not sure if the article mentioned it (writing style was getting on my nerves about half way through), but endometriosis is also highly hereditary. My wife’s mother has 2 sisters. One sister had endometriosis and the other two had daughters (including my wife) who had it. It has also been known to degrade egg quality, resulting in total infertility in some (including my wife and her aunt—jury is still out on the cousin). I don’t think most reproductive surgeons think of endometriosis as untreatable. 1% rate of having some kind of complication from the surgery doesn’t sound crazy high to me. The recurrence rate I think depends pretty heavily on how pervasive the case was and how soon it was caught. My wife was in her late 20s when she had surgery to have it cut out via laparoscopy, and it wasn’t really a big deal. She had a hysterectomy this year for other reasons, over 15 years later and had no signs of recurrence.
- tptacek 1y ago
  The article mentions it. If you bailed before that point, you bailed just before it got really good.
cantor_S_drug 1y ago
I heard about this disease through an education channel. https://www.youtube.com/watch?v=KzA9VATcZhY https://www.youtube.com/watch?v=KzA9VATcZhY > The speaker had been experiencing symptoms like period pain, bloating, and fatigue for years, visiting many doctors without getting a proper diagnosis. When severe pain developed, a GP ordered an ultrasound but the speaker initially ignored the results, assuming it was just an ovarian cyst. However, after using the Ada AI medical diagnosis app, which asked questions about symptoms and calculated probabilities of various conditions, it suggested endometriosis - a condition the speaker had never heard of. This prompted them to return to their doctor, where the ultrasound results confirmed the AI's diagnosis of endometriosis.
anon291 1y ago
Just wait til you find out men can get it (extremely rare)
- RamblingCTO 1y ago
  I don't think it's beneficial to just put both in the same pot. It's just a similar condition in similar tissue afaiu. Men don't have a uterus.
  - anon291 1y ago
    Endometriosis is the presence of endometrial like tissue outside the uterus. Male cells retain the ability to transform into endometrial cells given the right stimulus. In rare pathological cases, this happens.
- bravesoul2 1y ago
  Is that with or without hormone treatment?
  - lostlogin 1y ago
    There is a strong correlation with hormones. It’s in the post.
    - bravesoul2 1y ago
      Thanks I wanted to see the commenters perspective and if they have different information or opinions.
- ddingus 1y ago
  Seriously? It must be in combination with one or more of the intersex conditions, yes? I just wrote up thread about a recurring chat between my wife and I all about what if Men got this disease... the law would change quickly!
  - 1y ago
fsckboy 1y ago
>what actually is the clinical definition of endometriosis? Plainly put, it is when tissue that resembles the uterine lining, or endometrial-like tissue, grows outside the uterus. The tissue can implant itself in nearby tissues, like the ovaries and fallopian tubes, or even more distal organs like the bladder and bowel. ... Over time, these repeated cycles of inflammation and fibrosis may lead to permanent structural changes within the abdomen and pelvis, contributing to chronic pelvic pain and infertility. i feel like something has been left out. why would uterine lining cells outside the uterus lead to infertility inside the uterus? from this description, I can see all sorts of things going haywire, but it was my impression that the uterine lining was scarred and otherwise rendered infertile for implantation.
- streptomycin 1y ago
  The uterus is not the only thing involved in infertility. More generally, endometriosis probably affects fertility in multiple different ways, and a woman with endometriosis and fertility issues may never know what her specific problem is. On the plus side, IVF works pretty well for many women with endometriosis. IVF patients with endo have only somewhat worse stats than other IVF patients.
- mlyle 1y ago
  You don't understand why uterine cells screwing up the fallopian tubes or ovaries would cause infertility?
- setopt 1y ago
  > why would uterine lining cells outside the uterus lead to infertility inside the uterus? The quoted text mentions for example the ovaries themselves, which if damaged can not release eggs, and the fallopian tubes, which if damaged can not transmit eggs from the ovaries to the uterus. These are outside the uterus.
  - twodave 1y ago
    According to my wife’s surgeon (she had endometriosis removed in 2008) there is some belief that the condition can actually cause the womb to become less hospitable to egg development, i.e. the fluids en utero actually weaken the health of the eggs.
ddingus 1y ago
[flagged]
- s1ncere 1y ago
  [flagged]
  - benatkin 1y ago
    Looking through these three graphs, there's more to it than that. Breast cancer mortality by age: https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/breast-cancer/mortality#heading-One https://www.cancerresearchuk.org/health-professional/cancer-... Prostate cancer mortality by age: https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/prostate-cancer/mortality#heading-One https://www.cancerresearchuk.org/health-professional/cancer-... Testicular cancer mortality by age: https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/testicular-cancer/mortality#heading-One https://www.cancerresearchuk.org/health-professional/cancer-...
  - mimentum 1y ago
    Breast cancer affects men too.
  - jrflowers 1y ago
    According to the American Cancer Society, it is estimated that there will be over 62,000 more cases of breast cancer than prostate cancer in the US this year, and will kill over 6000 more people. >The American Cancer Society’s estimates for prostate cancer in the United States for 2025 are: >About 313,780 new cases of prostate cancer >About 35,770 deaths from prostate cancer https://www.cancer.org/cancer/types/prostate-cancer/about/key-statistics.html https://www.cancer.org/cancer/types/prostate-cancer/about/ke... >The American Cancer Society's estimates for breast cancer in the United States for 2025 are: >About 316,950 new cases of invasive breast cancer will be diagnosed in women. >About 59,080 new cases of ductal carcinoma in situ (DCIS) will be diagnosed. >About 42,170 women will die from breast cancer. https://www.cancer.org/cancer/types/breast-cancer/about/how-common-is-breast-cancer.html https://www.cancer.org/cancer/types/breast-cancer/about/how-...
codetweep 1y ago
The article sort of glosses over a major distinction regarding the surgical approach to endometriosis -- 90+% of OB/GYNs are trained to ablate (burn-to-destroy) the affected tissue, whereas more recently, a crop of surgeons have begun to specialize in excising a wide area of tissue surrounding the affected tissue. Many times, the tissue to destroy is not on the surface - it is deeply infiltrating what it has adhered to. Burning it is just like cutting grass, it'll come right back. Success rates with excisional surgery are markedly better, but not a silver bullet.
- twodave 1y ago
  Not to mention the burning creates a lot more scar tissue, which greatly impacts future reproductive prospects depending on where the burning is taking place…
Sniffnoy 1y ago
So, why don't cancer treatments work here? Or would they likely work here but they largely haven't been tried yet? (See also codetweep's comment about surgery.)
- Nasrudith 1y ago
  Endometriosisis is 'benign' in the self-contained sense only. I would imagine that changes the target profile. I don't think there is are any rigid 'out of scope' policing drugs or biological mechanisms for that. As opposed to cancerous malformed biomarkers which scream "I shouldn't exist!" to the immune system.
  - grumpy-de-sre 1y ago
    I doubt chemotherapy drugs have a favorable risk/benefit ratio. The original article notes that somatic DNA changes might be involved, so perhaps immunotherapy might be useful. Interestingly this is being studied [1]. 1. https://pmc.ncbi.nlm.nih.gov/articles/PMC10150018/ https://pmc.ncbi.nlm.nih.gov/articles/PMC10150018/
at_a_remove 1y ago
I had to gently chide a surgeon who came out in the middle of a friend's hysterectomy (and bonus ovary removal) to do a kind of "drive by, not expecting any kind of feedback" picture show in the middle for not having a plan on adhesion barriers. He hadn't planned on doing them! I pointed out her history (or hystery, heh) and the kinda obvious gluey, webby bits in the pictures (they're quite visible once you look at enough of them). Then I grilled him on which of the then-three brands were on the market and which were had on hand. Dude acted like he was just yanking a bad video card on a Friday afternoon, which I found less than optimal. I was not surprised when, post-surgery, the rest of the staff attempted to hustle us out the door. I had abort their well-rehearsed ejection procedure to get aftercare instructions ... and to make sure the scripts had already been called in ... and then to get the follow-up appointment cemented and the "oh shit something has gone wrong" post-surgical emergency contact information. I suppose in the future they will have a kind of water slide from the recovery room into the parking lot, and they just will aim for the open passenger-side door.
- a2tech 1y ago
  Any surgeon will tell you the best patient is the one you don’t have to talk to, so don’t think your experience is an outlier. Your water slide to the parking lot is an apt description—-I can 100% believe people wanting such a thing.
- soared 1y ago
  Sounds like you need to start going to a different hospital.
emmelaich 1y ago
Considering the magic of birth and the war in the womb[0] it's amazing that the reproductive system works as well as it does. Pregnancy relieves the symptoms but is not a cure. But surely you'd have to consider lower fertility has something to do with the increase in endometriosis. [0] https://aeon.co/essays/why-pregnancy-is-a-biological-war-between-mother-and-baby https://aeon.co/essays/why-pregnancy-is-a-biological-war-bet...
- kqr 1y ago
  > Considering the war in the womb it's amazing that the reproductive system works as well as it does. ...or maybe it's because of that war it works as well as it does? Maybe it takes agents in opposition to evolve enough redundancies and contingency plans to get things working? Before Mendel, at least some people hypothesised there must be some sort of "battle of the germ cell" that powered evolution, because unimportant functions -- even when they aren't actively detrimental -- tend to be forced nearly out of existence.[1] Even our bodies, miracles of cooperation, evolve to some degree under antagonism. Thanks for referencing that article, though. I was going to but now I don't have to. Everyone should read it. Utterly fascinating. [1]: The example that comes to mind are the femurs of whales. They are absolutely tiny. Much smaller than can reasonably explained by them being a problem for the whale itself.
jwrallie 1y ago
One interesting thing I observed by being trilingual is that different countries’ medical systems will give different and sometimes contradictory instructions when you Google for some medical information. One of this is sex during menstruation. I was instructed that it was not a problem but in Japan they specifically instruct that it is discouraged because there might be a link with Endometriosis. If you try to Google if sex in menstruation can lead to infertility you are going to find little information in English, but you are going to find many hits in Japanese.
- pcthrowaway 1y ago
  Do you mind sharing a promising article in Japanese which can be translated?
  - worldsayshi 1y ago
    This makes me wonder how to search for content in another language? I mean most sites are almost trivially translatable by now.
    - thaumasiotes 1y ago
      You can easily autotranslate your question into whatever language you'd like to search, go to a search engine for that language, and see what you get. If I want to do a search for Chinese content, I go to baidu, enter a query that makes sense to me, and look for a suggested query that looks right. Doing this is much less useful than you might think. You'll still lack the ability to interpret the search results, or the pages you click through to. It's not an issue of translating the content. You have no idea what kind of pages you've turned up, what the ones you want should look like, or how information is laid out in the foreign websites. Your habits from the English-speaking internet won't apply.
    - OJFord 1y ago
      You just search in the language you're looking for? (And if you have a country filter/hint set on your search engine of choice, you disable or change it appropriately.)
pcthrowaway 1y ago
Indeed, very interesting! I suspect readers who enjoyed this may also enjoy this recent dive into the prostate which was shared here ~7 weeks ago: https://news.ycombinator.com/item?id=43801906 https://news.ycombinator.com/item?id=43801906 . It has a somewhat more hopeful and dare I say, happier ending
- vindex10 1y ago
  Interestingly, the mechanism in the "prostate" article also refers to the reversed blood flow. It is not the same as retrograde menstruation, but it kind of rings a bell to me as non-biologist.
amai 1y ago
Many doctors just prescribe birth control pills as treatment for endometriosis and call it a day. So much for it being an interesting disease.
dillydogg 1y ago
To help support the "retrograde menses is incomplete" discussion; I was involved in a case where a woman had a bone marrow transplant for her CML. She later developed "appendicitis" when but when the tissue sample came to the pathologist, the appendicitis was actually endometriosis. Even more, the endometriosis was XY karyotype, ie derived from the bone marrow transplant. We wrote up a case report. NB - It is a known phenomena in bone marrow transplant recipients that the donor DNA can be taken up by host cells by unknown mechanisms, so it isn't a guarantee that the endometriosis was developed from the transplanted bone marrow.
- SwtCyber 1y ago
  It's one thing to know, in theory, that stem cells can end up in strange places after transplantation, but to see that play out in something as enigmatic as endometriosis really underlines how little we know about the underlying mechanisms.
  - dillydogg 1y ago
    It was surprising to me when I saw the cells under the scope when I expected appendicitis! The karyotype was just for fun, but the XY testing was quite unexpected.
SwtCyber 1y ago
The comparison to cancer is honestly kind of chilling. The fact that endometriosis lesions pick up the same mutations, adapt to evade the immune system, and yet are considered "benign" is such a medical blind spot
- echelon 1y ago
  There are probably other pluripotent cell types that do the exact same thing, but just don't get detected since very few cell types slough off with a hormonal cycle. There are probably many more instances of this disease in men that never get triggered and discovered due to atypical hormonal levels being required. Our bodies are weird systems.
kjellsbells 1y ago
I'm always struck by stories of how difficult it is to get a condition diagnosed. Endometriosis is a great example as the OP author notes. The New York Times used to run a series of medical case studies in their magazine, and over and over again the story was essentially that the patient sought care from primary care and specialists, without success, and were generally miserable, until a miraculous event happened, like a friend's aunt knowing someone at Johns Hopkins, and that doctor having the time to think about it. The problem was incredibly evident for female patients. I don't know whether this is a result of doctors being burned out by the system that they work in, a certain doctorial arrogance that diminishes their listening skills, over-reliance on heuristic diagnoses, some kind of ignorance of womens' conditions, or even a kind of medical misogyny. But it pushes people pretty quickly towards Dr Google and sometimes, sadly, into quackery, and that can't be a good thing.
- scythe 1y ago
  Popular understanding, particularly in the United States, is a little behind the scientific opinion on the subject. Most women I've talked to are still under the impression that endometriosis can only be diagnosed by laparoscopy. But there have been improvements in the use of contrast MRI for diagnosis, and as of 2022 the guidelines in Europe recommend MRI as the first option. https://pmc.ncbi.nlm.nih.gov/articles/PMC9732073/ https://pmc.ncbi.nlm.nih.gov/articles/PMC9732073/ However, the protocol isn't perfect, and there is probably still room to develop better contrast agents and MR sequences. >some kind of ignorance of womens' conditions Some things are just hard. The treatments for benign prostatic hyperplasia suck too. There is no effective reversible pharmaceutical male birth control. Et cetera.
- placardloop 1y ago
  My significant other is going through this situation, and in my experience it seems as though most doctors just simply don’t care to actually find a diagnosis (or at least, don’t have the time or motivation to care), combined with a hefty dose of “that’s not my job”. My SO has been to specialist after specialist who spends a grand total of 2 minutes listening to the symptoms, followed by “well let’s do some blood tests and see what they say” (ignoring that the last 5 doctors already did blood tests). And then when the blood tests come back with nothing obvious, the doctor just throws up their hands and says “well I don’t know what to do, you should go see <other specialist>”. The reason the “family member or friend who knows someone who can recommend a doctor” seems to work well, in my experience, is because that doctor then has some motivation to actually care, as the patient is connected to someone they already know and care about. Our medical system financially incentivizes doctors to see as many patients as possible, but doesn’t financially incentivize actually making them better. For that, the system just hopes that doctors will care, without giving them the room to do so.
deleted 1y ago
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dapper_bison17 1y ago
Wow this article came at such a coincidental time! tl:dr One of my best friends has Endo and through lifestyle changes was able to "cure herself". It's in quotes because, like asthma, you don't really get rid of it, but it's gotten to the point where her Endometriomas have shrunken to a sixth of their size (verified by an ultrasound), some have even completely disappeared, she feels no pain and can live "normal" life. For those who may be interested in more details: She was diagnosed with Endo about 5 years ago. Had to go through 3 doctors until she finally found one who diagnosed her with it. The only options given to her: 1. Surgery to remove the endometriomas. 2. Pain killers. 3. Weed. 2 and 3 aren't real solutions, and from doom-scrolling through Facebook / reddit it's evident that at best, 1 only offers temporary relief. So she declined and opted to try and find a different solution. Since Western medicine failed her, she looked into Eastern medicine. Then she started doing Yoga, took a year-long Nutrition course that also incorporated Eastern approaches. Stopped eating processed foods, started journaling, removing stress from her life as best she could. After sticking to this, and a bunch of trial and error, she's gotten to the point I mentioned above. Now she has her own online program where she teaches other women the science and methodology she used to manage her symptoms. And some of the success stories are insane. Women who have lived with bloating and pain for years are suddenly seeing improvements in a matter of weeks. Currently the course is in Hebrew but I'm helping to translate it to English. If anyone here knows someone who has Endo and is interested in getting access to the program during its beta-English phase, let me know :) breeding_suds837@simplelogin.com
joshuajooste05 1y ago
My girlfriend has endometriosis, I hadn't really read much about it until now, thank you for writing! I think this is a story too common in women's healthcare. It's often massively underfunded and underesearched, another symptom of the fact our society had not let women into STEM/politics for decades, and continues to erect barriers to encourage them not too. I like the fact you spelled out the incentives for PhDs to do so at the end ;). Would be great!
- catigula 1y ago
  >and continues to erect barriers to encourage them not too Funny, my experience is the absolute opposite of this claim. Also, I could be wrong but I'm pretty sure breast cancer is the single most well-funded areas of cancer research. There's a toolbox a certain type of person likes to reach for even when the evidence is inconsistent.
  - kjkjadksj 1y ago
    Well outside of breast and ovarian cancer for obvious reasons, most mouse models tend to be male to eliminate the variable of the hormone cycle. But if some effect is actually influenced by that cycle you just ensured you will never find it. I’m also not sure how similar the mouse hormone cycle is to humans.
    - catigula 1y ago
      Completely different argument.
      - kjkjadksj 1y ago
        It was an example of research on women’s health being underfunded or underresearched.
        catigula 1y ago
        No, it was a non-sequitur argument after having your core premise disproven with an extremely common and well-known example of women's health being extremely well-funded. You even carved out special pleading by trying to exempt it.
VagabundoP 1y ago
Having had someone close go through it with Endo, the pain she'd deal with meant she could barely walk 100m and lost 20kg from being bed bound and unable to eat. Eventually Endo nearly killed this person it was so debilitating and only a hysterectomy managed to restore her life back to her, which obviously brought on early menopause. Not all Endo suffers get that bad. But there's just no way of knowing if you're going to be one of the unlucky ones. For QOL if you diagnosed, make some plans. If you want kids ever then make that your top priority, because it can effect fertility, and being pregnant can help. Even when its seems like its gone, it might come back. If your country doesn't have free public health insurance, get it and get good coverage, you don't want to be left hanging here. The operations can really help for a time, but it depends on how good the surgeon is. Find a good one that listens to you. Endo can gum up things and the scar tissue from ops can gum up your insides, and its a real messy treatment(laser ablation). Ovaries can get calcified etc. If it gets bad bad - and you'll know what I'm talking about if it happens to you or someone you care about- do not put off getting a hysterectomy. There is no point in suffering in pain month after month and not having a life. If I had to do the last twenty years over again I would have counselled her to get the hysterectomy when she couldn't walk down the stairs without pain, after multiple hormone treatments and ops.
Llamamoe 1y ago
In the hope that someone finds it useful: I have no idea how likely it is to replicate, but there's a publication linking Fusobacterium infiltration of endometrial tissue with the development of endometriosis: https://www.science.org/doi/10.1126/scitranslmed.add1531 https://www.science.org/doi/10.1126/scitranslmed.add1531
acyou 1y ago
In what way is endometriosis related to a) hormonal birth control (estrogen and progestin), b) sexually transmitted disease, c) age, d) pregnancy, e) obesity? The article didn't seem to discuss these much, I don't know much about endometriosis, but I feel like I have heard these come up and was surprised not to see them discussed.
- pathartl 1y ago
  Because it's genetic. It's something that develops during sexual maturation, it doesn't just pop up. My SO is the third generation in her family that has Endo. Women will have flare ups where they will be in excruciating pain during one menstruation cycle, and the next might be a non-endo's idea of a bad cramp, so it's often misdiagnosed as severe constipation, appendicitis (even though the pain is almost always on the right side), or they're given the "it's just in your head" treatment.
kathwatermann 1y ago
For the past few years I have had difficulty working out in the yard, and then in 2018 it got harder and harder to breathe. After many tests, it was a CT scan that showed Emphysema, and scarring in my lungs. I quit smoking 8 years ago, but the damage has been done. I got to a point I couldn’t catch my breath and was coughing so hard I thought the top of my head would blow off; nothing was really working to help my condition. Finally, I started on the COPD formula, and with the help of this treatment, I’m active again. Its effects on emphysema are amazing; all my symptoms gradually faded away. I breathe much more freely now and no longer need my oxygen cylinder! Visit Uinehealthcentre. net to get this formula. I'm surprised a lot of people with COPD/emphysema haven't heard of the formula.

392 points by crescit_eundo 1y ago

Not sure if the article mentioned it (writing style was getting on my nerves about half way through), but endometriosis is also highly hereditary. My wife’s mother has 2 sisters. One sister had endometriosis and the other two had daughters (including my wife) who had it. It has also been known to degrade egg quality, resulting in total infertility in some (including my wife and her aunt—jury is still out on the cousin). I don’t think most reproductive surgeons think of endometriosis as untreatable. 1% rate of having some kind of complication from the surgery doesn’t sound crazy high to me. The recurrence rate I think depends pretty heavily on how pervasive the case was and how soon it was caught. My wife was in her late 20s when she had surgery to have it cut out via laparoscopy, and it wasn’t really a big deal. She had a hysterectomy this year for other reasons, over 15 years later and had no signs of recurrence.

tptacek 1y ago
The article mentions it. If you bailed before that point, you bailed just before it got really good.

cantor_S_drug 1y ago

I heard about this disease through an education channel. https://www.youtube.com/watch?v=KzA9VATcZhY https://www.youtube.com/watch?v=KzA9VATcZhY > The speaker had been experiencing symptoms like period pain, bloating, and fatigue for years, visiting many doctors without getting a proper diagnosis. When severe pain developed, a GP ordered an ultrasound but the speaker initially ignored the results, assuming it was just an ovarian cyst. However, after using the Ada AI medical diagnosis app, which asked questions about symptoms and calculated probabilities of various conditions, it suggested endometriosis - a condition the speaker had never heard of. This prompted them to return to their doctor, where the ultrasound results confirmed the AI's diagnosis of endometriosis.

anon291 1y ago

Just wait til you find out men can get it (extremely rare)

RamblingCTO 1y ago
I don't think it's beneficial to just put both in the same pot. It's just a similar condition in similar tissue afaiu. Men don't have a uterus.
- anon291 1y ago
  Endometriosis is the presence of endometrial like tissue outside the uterus. Male cells retain the ability to transform into endometrial cells given the right stimulus. In rare pathological cases, this happens.
bravesoul2 1y ago
Is that with or without hormone treatment?
- lostlogin 1y ago
  There is a strong correlation with hormones. It’s in the post.
  - bravesoul2 1y ago
    Thanks I wanted to see the commenters perspective and if they have different information or opinions.
ddingus 1y ago
Seriously? It must be in combination with one or more of the intersex conditions, yes? I just wrote up thread about a recurring chat between my wife and I all about what if Men got this disease... the law would change quickly!
- 1y ago

fsckboy 1y ago

>what actually is the clinical definition of endometriosis? Plainly put, it is when tissue that resembles the uterine lining, or endometrial-like tissue, grows outside the uterus. The tissue can implant itself in nearby tissues, like the ovaries and fallopian tubes, or even more distal organs like the bladder and bowel. ... Over time, these repeated cycles of inflammation and fibrosis may lead to permanent structural changes within the abdomen and pelvis, contributing to chronic pelvic pain and infertility. i feel like something has been left out. why would uterine lining cells outside the uterus lead to infertility inside the uterus? from this description, I can see all sorts of things going haywire, but it was my impression that the uterine lining was scarred and otherwise rendered infertile for implantation.

streptomycin 1y ago
The uterus is not the only thing involved in infertility. More generally, endometriosis probably affects fertility in multiple different ways, and a woman with endometriosis and fertility issues may never know what her specific problem is. On the plus side, IVF works pretty well for many women with endometriosis. IVF patients with endo have only somewhat worse stats than other IVF patients.
mlyle 1y ago
You don't understand why uterine cells screwing up the fallopian tubes or ovaries would cause infertility?
setopt 1y ago
> why would uterine lining cells outside the uterus lead to infertility inside the uterus? The quoted text mentions for example the ovaries themselves, which if damaged can not release eggs, and the fallopian tubes, which if damaged can not transmit eggs from the ovaries to the uterus. These are outside the uterus.
- twodave 1y ago
  According to my wife’s surgeon (she had endometriosis removed in 2008) there is some belief that the condition can actually cause the womb to become less hospitable to egg development, i.e. the fluids en utero actually weaken the health of the eggs.

ddingus 1y ago

[flagged]

s1ncere 1y ago
[flagged]
- benatkin 1y ago
  Looking through these three graphs, there's more to it than that. Breast cancer mortality by age: https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/breast-cancer/mortality#heading-One https://www.cancerresearchuk.org/health-professional/cancer-... Prostate cancer mortality by age: https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/prostate-cancer/mortality#heading-One https://www.cancerresearchuk.org/health-professional/cancer-... Testicular cancer mortality by age: https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/testicular-cancer/mortality#heading-One https://www.cancerresearchuk.org/health-professional/cancer-...
- mimentum 1y ago
  Breast cancer affects men too.
- jrflowers 1y ago
  According to the American Cancer Society, it is estimated that there will be over 62,000 more cases of breast cancer than prostate cancer in the US this year, and will kill over 6000 more people. >The American Cancer Society’s estimates for prostate cancer in the United States for 2025 are: >About 313,780 new cases of prostate cancer >About 35,770 deaths from prostate cancer https://www.cancer.org/cancer/types/prostate-cancer/about/key-statistics.html https://www.cancer.org/cancer/types/prostate-cancer/about/ke... >The American Cancer Society's estimates for breast cancer in the United States for 2025 are: >About 316,950 new cases of invasive breast cancer will be diagnosed in women. >About 59,080 new cases of ductal carcinoma in situ (DCIS) will be diagnosed. >About 42,170 women will die from breast cancer. https://www.cancer.org/cancer/types/breast-cancer/about/how-common-is-breast-cancer.html https://www.cancer.org/cancer/types/breast-cancer/about/how-...

codetweep 1y ago

The article sort of glosses over a major distinction regarding the surgical approach to endometriosis -- 90+% of OB/GYNs are trained to ablate (burn-to-destroy) the affected tissue, whereas more recently, a crop of surgeons have begun to specialize in excising a wide area of tissue surrounding the affected tissue. Many times, the tissue to destroy is not on the surface - it is deeply infiltrating what it has adhered to. Burning it is just like cutting grass, it'll come right back. Success rates with excisional surgery are markedly better, but not a silver bullet.

twodave 1y ago
Not to mention the burning creates a lot more scar tissue, which greatly impacts future reproductive prospects depending on where the burning is taking place…

Sniffnoy 1y ago

So, why don't cancer treatments work here? Or would they likely work here but they largely haven't been tried yet? (See also codetweep's comment about surgery.)

Nasrudith 1y ago
Endometriosisis is 'benign' in the self-contained sense only. I would imagine that changes the target profile. I don't think there is are any rigid 'out of scope' policing drugs or biological mechanisms for that. As opposed to cancerous malformed biomarkers which scream "I shouldn't exist!" to the immune system.
- grumpy-de-sre 1y ago
  I doubt chemotherapy drugs have a favorable risk/benefit ratio. The original article notes that somatic DNA changes might be involved, so perhaps immunotherapy might be useful. Interestingly this is being studied [1]. 1. https://pmc.ncbi.nlm.nih.gov/articles/PMC10150018/ https://pmc.ncbi.nlm.nih.gov/articles/PMC10150018/

at_a_remove 1y ago

I had to gently chide a surgeon who came out in the middle of a friend's hysterectomy (and bonus ovary removal) to do a kind of "drive by, not expecting any kind of feedback" picture show in the middle for not having a plan on adhesion barriers. He hadn't planned on doing them! I pointed out her history (or hystery, heh) and the kinda obvious gluey, webby bits in the pictures (they're quite visible once you look at enough of them). Then I grilled him on which of the then-three brands were on the market and which were had on hand. Dude acted like he was just yanking a bad video card on a Friday afternoon, which I found less than optimal. I was not surprised when, post-surgery, the rest of the staff attempted to hustle us out the door. I had abort their well-rehearsed ejection procedure to get aftercare instructions ... and to make sure the scripts had already been called in ... and then to get the follow-up appointment cemented and the "oh shit something has gone wrong" post-surgical emergency contact information. I suppose in the future they will have a kind of water slide from the recovery room into the parking lot, and they just will aim for the open passenger-side door.

a2tech 1y ago
Any surgeon will tell you the best patient is the one you don’t have to talk to, so don’t think your experience is an outlier. Your water slide to the parking lot is an apt description—-I can 100% believe people wanting such a thing.
soared 1y ago
Sounds like you need to start going to a different hospital.

emmelaich 1y ago

Considering the magic of birth and the war in the womb[0] it's amazing that the reproductive system works as well as it does. Pregnancy relieves the symptoms but is not a cure. But surely you'd have to consider lower fertility has something to do with the increase in endometriosis. [0] https://aeon.co/essays/why-pregnancy-is-a-biological-war-between-mother-and-baby https://aeon.co/essays/why-pregnancy-is-a-biological-war-bet...

kqr 1y ago
> Considering the war in the womb it's amazing that the reproductive system works as well as it does. ...or maybe it's because of that war it works as well as it does? Maybe it takes agents in opposition to evolve enough redundancies and contingency plans to get things working? Before Mendel, at least some people hypothesised there must be some sort of "battle of the germ cell" that powered evolution, because unimportant functions -- even when they aren't actively detrimental -- tend to be forced nearly out of existence.[1] Even our bodies, miracles of cooperation, evolve to some degree under antagonism. Thanks for referencing that article, though. I was going to but now I don't have to. Everyone should read it. Utterly fascinating. [1]: The example that comes to mind are the femurs of whales. They are absolutely tiny. Much smaller than can reasonably explained by them being a problem for the whale itself.

jwrallie 1y ago

One interesting thing I observed by being trilingual is that different countries’ medical systems will give different and sometimes contradictory instructions when you Google for some medical information. One of this is sex during menstruation. I was instructed that it was not a problem but in Japan they specifically instruct that it is discouraged because there might be a link with Endometriosis. If you try to Google if sex in menstruation can lead to infertility you are going to find little information in English, but you are going to find many hits in Japanese.

pcthrowaway 1y ago
Do you mind sharing a promising article in Japanese which can be translated?
- worldsayshi 1y ago
  This makes me wonder how to search for content in another language? I mean most sites are almost trivially translatable by now.
  - thaumasiotes 1y ago
    You can easily autotranslate your question into whatever language you'd like to search, go to a search engine for that language, and see what you get. If I want to do a search for Chinese content, I go to baidu, enter a query that makes sense to me, and look for a suggested query that looks right. Doing this is much less useful than you might think. You'll still lack the ability to interpret the search results, or the pages you click through to. It's not an issue of translating the content. You have no idea what kind of pages you've turned up, what the ones you want should look like, or how information is laid out in the foreign websites. Your habits from the English-speaking internet won't apply.
  - OJFord 1y ago
    You just search in the language you're looking for? (And if you have a country filter/hint set on your search engine of choice, you disable or change it appropriately.)

pcthrowaway 1y ago

Indeed, very interesting! I suspect readers who enjoyed this may also enjoy this recent dive into the prostate which was shared here ~7 weeks ago: https://news.ycombinator.com/item?id=43801906 https://news.ycombinator.com/item?id=43801906 . It has a somewhat more hopeful and dare I say, happier ending

vindex10 1y ago
Interestingly, the mechanism in the "prostate" article also refers to the reversed blood flow. It is not the same as retrograde menstruation, but it kind of rings a bell to me as non-biologist.

amai 1y ago

Many doctors just prescribe birth control pills as treatment for endometriosis and call it a day. So much for it being an interesting disease.

dillydogg 1y ago

To help support the "retrograde menses is incomplete" discussion; I was involved in a case where a woman had a bone marrow transplant for her CML. She later developed "appendicitis" when but when the tissue sample came to the pathologist, the appendicitis was actually endometriosis. Even more, the endometriosis was XY karyotype, ie derived from the bone marrow transplant. We wrote up a case report. NB - It is a known phenomena in bone marrow transplant recipients that the donor DNA can be taken up by host cells by unknown mechanisms, so it isn't a guarantee that the endometriosis was developed from the transplanted bone marrow.

SwtCyber 1y ago
It's one thing to know, in theory, that stem cells can end up in strange places after transplantation, but to see that play out in something as enigmatic as endometriosis really underlines how little we know about the underlying mechanisms.
- dillydogg 1y ago
  It was surprising to me when I saw the cells under the scope when I expected appendicitis! The karyotype was just for fun, but the XY testing was quite unexpected.

SwtCyber 1y ago

The comparison to cancer is honestly kind of chilling. The fact that endometriosis lesions pick up the same mutations, adapt to evade the immune system, and yet are considered "benign" is such a medical blind spot

echelon 1y ago
There are probably other pluripotent cell types that do the exact same thing, but just don't get detected since very few cell types slough off with a hormonal cycle. There are probably many more instances of this disease in men that never get triggered and discovered due to atypical hormonal levels being required. Our bodies are weird systems.

kjellsbells 1y ago

I'm always struck by stories of how difficult it is to get a condition diagnosed. Endometriosis is a great example as the OP author notes. The New York Times used to run a series of medical case studies in their magazine, and over and over again the story was essentially that the patient sought care from primary care and specialists, without success, and were generally miserable, until a miraculous event happened, like a friend's aunt knowing someone at Johns Hopkins, and that doctor having the time to think about it. The problem was incredibly evident for female patients. I don't know whether this is a result of doctors being burned out by the system that they work in, a certain doctorial arrogance that diminishes their listening skills, over-reliance on heuristic diagnoses, some kind of ignorance of womens' conditions, or even a kind of medical misogyny. But it pushes people pretty quickly towards Dr Google and sometimes, sadly, into quackery, and that can't be a good thing.

scythe 1y ago
Popular understanding, particularly in the United States, is a little behind the scientific opinion on the subject. Most women I've talked to are still under the impression that endometriosis can only be diagnosed by laparoscopy. But there have been improvements in the use of contrast MRI for diagnosis, and as of 2022 the guidelines in Europe recommend MRI as the first option. https://pmc.ncbi.nlm.nih.gov/articles/PMC9732073/ https://pmc.ncbi.nlm.nih.gov/articles/PMC9732073/ However, the protocol isn't perfect, and there is probably still room to develop better contrast agents and MR sequences. >some kind of ignorance of womens' conditions Some things are just hard. The treatments for benign prostatic hyperplasia suck too. There is no effective reversible pharmaceutical male birth control. Et cetera.
placardloop 1y ago
My significant other is going through this situation, and in my experience it seems as though most doctors just simply don’t care to actually find a diagnosis (or at least, don’t have the time or motivation to care), combined with a hefty dose of “that’s not my job”. My SO has been to specialist after specialist who spends a grand total of 2 minutes listening to the symptoms, followed by “well let’s do some blood tests and see what they say” (ignoring that the last 5 doctors already did blood tests). And then when the blood tests come back with nothing obvious, the doctor just throws up their hands and says “well I don’t know what to do, you should go see <other specialist>”. The reason the “family member or friend who knows someone who can recommend a doctor” seems to work well, in my experience, is because that doctor then has some motivation to actually care, as the patient is connected to someone they already know and care about. Our medical system financially incentivizes doctors to see as many patients as possible, but doesn’t financially incentivize actually making them better. For that, the system just hopes that doctors will care, without giving them the room to do so.

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dapper_bison17 1y ago

Wow this article came at such a coincidental time! tl:dr One of my best friends has Endo and through lifestyle changes was able to "cure herself". It's in quotes because, like asthma, you don't really get rid of it, but it's gotten to the point where her Endometriomas have shrunken to a sixth of their size (verified by an ultrasound), some have even completely disappeared, she feels no pain and can live "normal" life. For those who may be interested in more details: She was diagnosed with Endo about 5 years ago. Had to go through 3 doctors until she finally found one who diagnosed her with it. The only options given to her: 1. Surgery to remove the endometriomas. 2. Pain killers. 3. Weed. 2 and 3 aren't real solutions, and from doom-scrolling through Facebook / reddit it's evident that at best, 1 only offers temporary relief. So she declined and opted to try and find a different solution. Since Western medicine failed her, she looked into Eastern medicine. Then she started doing Yoga, took a year-long Nutrition course that also incorporated Eastern approaches. Stopped eating processed foods, started journaling, removing stress from her life as best she could. After sticking to this, and a bunch of trial and error, she's gotten to the point I mentioned above. Now she has her own online program where she teaches other women the science and methodology she used to manage her symptoms. And some of the success stories are insane. Women who have lived with bloating and pain for years are suddenly seeing improvements in a matter of weeks. Currently the course is in Hebrew but I'm helping to translate it to English. If anyone here knows someone who has Endo and is interested in getting access to the program during its beta-English phase, let me know :) breeding_suds837@simplelogin.com

joshuajooste05 1y ago

My girlfriend has endometriosis, I hadn't really read much about it until now, thank you for writing! I think this is a story too common in women's healthcare. It's often massively underfunded and underesearched, another symptom of the fact our society had not let women into STEM/politics for decades, and continues to erect barriers to encourage them not too. I like the fact you spelled out the incentives for PhDs to do so at the end ;). Would be great!

catigula 1y ago
>and continues to erect barriers to encourage them not too Funny, my experience is the absolute opposite of this claim. Also, I could be wrong but I'm pretty sure breast cancer is the single most well-funded areas of cancer research. There's a toolbox a certain type of person likes to reach for even when the evidence is inconsistent.
- kjkjadksj 1y ago
  Well outside of breast and ovarian cancer for obvious reasons, most mouse models tend to be male to eliminate the variable of the hormone cycle. But if some effect is actually influenced by that cycle you just ensured you will never find it. I’m also not sure how similar the mouse hormone cycle is to humans.
  - catigula 1y ago
    Completely different argument.
    - kjkjadksj 1y ago
      It was an example of research on women’s health being underfunded or underresearched.
      - catigula 1y ago
        No, it was a non-sequitur argument after having your core premise disproven with an extremely common and well-known example of women's health being extremely well-funded. You even carved out special pleading by trying to exempt it.

VagabundoP 1y ago

Having had someone close go through it with Endo, the pain she'd deal with meant she could barely walk 100m and lost 20kg from being bed bound and unable to eat. Eventually Endo nearly killed this person it was so debilitating and only a hysterectomy managed to restore her life back to her, which obviously brought on early menopause. Not all Endo suffers get that bad. But there's just no way of knowing if you're going to be one of the unlucky ones. For QOL if you diagnosed, make some plans. If you want kids ever then make that your top priority, because it can effect fertility, and being pregnant can help. Even when its seems like its gone, it might come back. If your country doesn't have free public health insurance, get it and get good coverage, you don't want to be left hanging here. The operations can really help for a time, but it depends on how good the surgeon is. Find a good one that listens to you. Endo can gum up things and the scar tissue from ops can gum up your insides, and its a real messy treatment(laser ablation). Ovaries can get calcified etc. If it gets bad bad - and you'll know what I'm talking about if it happens to you or someone you care about- do not put off getting a hysterectomy. There is no point in suffering in pain month after month and not having a life. If I had to do the last twenty years over again I would have counselled her to get the hysterectomy when she couldn't walk down the stairs without pain, after multiple hormone treatments and ops.

Llamamoe 1y ago

In the hope that someone finds it useful: I have no idea how likely it is to replicate, but there's a publication linking Fusobacterium infiltration of endometrial tissue with the development of endometriosis: https://www.science.org/doi/10.1126/scitranslmed.add1531 https://www.science.org/doi/10.1126/scitranslmed.add1531

acyou 1y ago

In what way is endometriosis related to a) hormonal birth control (estrogen and progestin), b) sexually transmitted disease, c) age, d) pregnancy, e) obesity? The article didn't seem to discuss these much, I don't know much about endometriosis, but I feel like I have heard these come up and was surprised not to see them discussed.

pathartl 1y ago
Because it's genetic. It's something that develops during sexual maturation, it doesn't just pop up. My SO is the third generation in her family that has Endo. Women will have flare ups where they will be in excruciating pain during one menstruation cycle, and the next might be a non-endo's idea of a bad cramp, so it's often misdiagnosed as severe constipation, appendicitis (even though the pain is almost always on the right side), or they're given the "it's just in your head" treatment.

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