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.

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

>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.

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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.

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.)

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.

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.

Many doctors just prescribe birth control pills as treatment for endometriosis and call it a day.

So much for it being an interesting disease.

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.

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

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.

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

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!

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.

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.

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