17 Facts About Endometriosis That Show Just How Horrific This Disease Is

One of the biggest hurdles people with endometriosis face is that we can rarely even rely on doctors. It still takes an average of seven years for someone to get a diagnosis for endometriosis despite this being an extremely prevalent disease. And many, many OB/GYNs still believe it's a disease that only impacts someone during their menstrual cycle or that pregnancy is a cure. Neither of these things are true. So much disinformation exists that people who live with this disease are forced to become an expert in order to get the care they deserve.

Endometriosis statistically impacts 1 in 10 people born with a uterus, which is about 200 million people worldwide. Endometriosis impacts all races and ethnicities despite being categorized as a "white woman's disease" throughout history. Because of this, Black women in particular are less likely to be diagnosed with endometriosis because they are often misdiagnosed or their pain isn't taken seriously. The same holds true for Hispanic women.

While endometriosis is primarily a disease that impacts women — it actually has been found in cis men. While this is rare, it is true, and worth noting.

The most common symptoms, according to Dr. Siedhoff, are: pain associated with periods, just pelvic pain in general, pain associated with intercourse, bladder frequency or pain, and intestinal symptoms that mimic IBS. Infertility can be a symptom. Sometimes those symptoms radiate to other areas. And then a bit more rarely, you can have endometriosis affect areas like, for example, you can get endometriosis in the skin or underneath an incision. So that may show up as a tender nodule that you can feel under the skin. And endometriosis could show up in the lung and cause people to get a collapsed lung with their periods, or to experience chest pain during their menstrual cycles. It can sometimes constrict other organs. Like, for example, it can constrict the tube that carries urine down from our kidneys to the bladder. It’s called the ureter. So, in rare cases, it can affect the kidney function. Endometriosis has also been found in the brain.

Endometriosis is often misdiagnosed as IBS and oftentimes this may cause people concern — do I have endometriosis in or on my intestines? According to Dr. Siedhoff, sometimes that can be the case, but other times, it doesn’t directly affect those organs. Meaning, we can’t see the endometriosis on them, but just having endometriosis present in the body can ramp up inflammation in those areas and cause some of these other symptoms as almost a reaction to the inflammation.

This is a huge barrier to getting care for endometriosis because surgery is expensive, invasive, and oftentimes medical and insurance providers are hesitant to move toward what they may view as a "drastic" measure. Dr. Siedhoff echoed this sentiment, telling BuzzFeed, "It takes a surgery to diagnose it. For everyone, it takes a surgery to get a definitive diagnosis."

I began noticing my most severe symptoms around the start of my menstrual cycle, but with reflection I can now see that I was experiencing some symptoms of endometriosis as early as age 12. And, in fact, there have been studies that have found endometriosis present in fetuses.

According to Dr. Siedhoff, there are various ways that you can use ablative techniques or ablation to treat endometriosis, but basically, you’re burning the surface of the endometriosis tissue. Excision is when you actually cut out the endometriosis tissue at its root and remove it from the body. And you can do that with energy sources and scissors, which physically cut the tissue and remove it. That’s the philosophy that Dr. Siedhoff takes when it comes to surgery for endometriosis in his patients, telling BuzzFeed, "The reason is, one, I do believe that excising even mild endometriosis has a greater benefit in terms of pain reduction than ablation."

But the other thing, according to Dr. Siedhoff, is that in his experience, "I have plenty of patients who had an ablation of endometriosis and have ongoing pain. And then when we actually excise or remove the tissue, they get significantly more pain relief from that. And part of the issue is just that the endometriosis might be under-treated. What we see on the surface isn’t necessarily all of the disease. It’s kind of like the tip of the iceberg. And it isn’t until I actually start excising or cutting out the tissue that you recognize how much is there. It requires a little bit more work. You have to be comfortable working around delicate structures in the pelvis that you don’t want to injure in the process of excising endometriosis, like the intestine or the ureter, or the bladder itself. But I think it’s worth it for the benefit that people get. Endometriosis has a lower likelihood of coming back when you excise it. And again, just from my own experience, there have been times when I need to repeat operations on people. And even with really advanced cases of endometriosis, setting aside the ovary where you can get a recurrent endometrioma, persistent endometriosis, most of the time when you go back in, all of that endometriosis that you excised, you don’t see it. And you might have a tiny recurrence, but it’s usually not extensive when you’ve done a good job excising it in the first place."

As an endometriosis patient myself, I can confirm that this has been very true in my experience. Many patients rely on Facebook groups in order to find surgeons who are knowledgable enough about endometriosis in order to give patients a shot at feeling better. In my own experience, I have met less than three doctors in the last fifteen years who know more about this disease than I do. And let me be clear: I barely passed biology in high school. The fact that I have had to pour over Facebook group posts and medical journals over the last decade in order to make sure that I know enough about a disease that impacts 1 in 10 people assigned female at birth in order to make sure I am getting adequate care is enraging! And I am a thin, white woman. This is seemingly the best case scenario. It should not require getting a whole-ass degree in endometriosis studies in order to get proper care for a disease that is so destructive and so common. When looking to find a surgeon who can perform excision surgery yourself, the iCareBetter site might be a good place to start.

I spoke to Dr. Siedhoff about this a bit more, and he told BuzzFeed, "The tissue that endometriosis grows from is called peritoneum. It’s the lining of all of our internal organs. And I take broad excisional biopsies of the areas where it most commonly occurs. So, like on the front side of the uterus near the bladder, on the back side of the uterus, between the uterus and the rectum. And I’m really liberal about taking out any of that peritoneum tissue that doesn’t look normal or is just in common places where endometriosis likes to grow. And when thinking about pathology of endometriosis; first of all, it might depend on the pathologist. So, if you have a pathologist who is experienced in looking for endometriosis even when it’s subtle, you have a better chance at getting accurate pathology results. Our group at Cedars has a lot of experience in reviewing pathology for endometriosis and have sometimes seen it in the tissue that has previously been called negative.

So, it may be that for some patients, if we’re early enough on in the disease process, we can’t see it with those excisional biopsies. So I don’t think it necessarily means that they don’t have endometriosis. And if they have symptoms that are really suggestive of it, I try to treat them in the same way that I would somebody where I got endometriosis back on the pathology specimen. And it may be that had we waited another three, four, five years to do the surgery, there would’ve been enough that actually could’ve been seen by a pathologist. A lot of providers seem to feel confused about what to do when people show up with these symptoms as well. Some people give the impression that somehow this is in the patient’s head or it’s psychological because they can’t find anything wrong on imaging tests or laboratory tests. And I think that’s a huge disservice and can be really traumatic for someone."

Luckily, this belief doesn't seem quite as prevalent among the medical community as it once was — but it hasn't disappeared completely. So let me be very clear: The reality is that pregnancy — like hormonal drug treatments, which I'll touch on more below — may temporarily suppress some symptoms associated with endometriosis, but does nothing to eradicate the disease itself. If you had endometriosis prior to becoming pregnant, you will still have it after.

Removing the uterus won't get rid of endometriosis because endometriosis does not exist in the uterus. Although some people do find relief after a hysterectomy, this could be because they also live with adenomyosis — a disease that is similar to endometriosis but exists in the uterus. Many people who live with endometriosis also live with adenomyosis. According to Dr. Siedhoff, part of where we get into problems is that a lot of times, physicians have been taught to sort of serially remove organs when somebody has persistent pain. And we know that’s not really an effective way to look at endometriosis. "The other part of this," according to Dr. Siedhoff, "is that the uterus may only be part of the issue. So, for a lot of patients, it’s not just pain associated with their periods. And that the other issue is there’s still hormone production. There’s still the inflammation associated with endometriosis itself. So, if you just remove the uterus, you're not removing the endometriosis or the inflammation caused by the endometriosis."

Research has found that endometriosis may develop its own blood supply to help it spread and even its own nerve supply to communicate with the brain. There are also some studies suggesting that endometriosis creates its own hormones. Dr. Siedhoff echoed this, telling BuzzFeed, "it behaves a little bit differently than the lining of the uterus in that it also makes its own hormone production."

When I asked Dr. Siedhoff for his take on where the hell this disease comes from, he was honest and said that we still don't know for sure. But, he continued, telling BuzzFeed, "There are various theories out there, and my guess is it’s probably a combination of them. The classic explanation was retrograde menstruation, where that menstrual tissue inside the uterus makes its way outside the uterus through the fallopian tubes. Which may be a partial explanation, but that probably isn’t the complete explanation. Because a lot of women have some retrograde menstruation, and clearly all women don’t have endometriosis. And as we know, endometriosis doesn’t look exactly like normal menstrual tissue. So, maybe it spreads through the blood or lymphatic system, which might be an explanation for how it can get to unusual places like in the lungs. It might be that stem cells from our bone marrow make their way into the pelvis and transform into endometriosis tissue. There could be an autoimmune-like effect. But it definitely seems to be an inflammatory process just based on the markers that we can detect, inflammatory markers that we can detect in the pelvic fluid of people with endometriosis."

"We don’t know for sure — there’s not a specific gene that’s been identified like eye color or certain other diseases that we know exactly how they’re inherited —but there is a familial component. So, if there is a family history of endometriosis, somebody is more likely to have it."

"When it comes to symptoms, the amount of endometriosis that somebody has doesn’t necessarily correlate with the degree of symptoms that they have," Dr. Siedhoff told BuzzFeed. He continued, "And then, even if endometriosis isn’t in the location where somebody experiences their symptoms, it doesn’t necessarily mean it’s not related either directly or indirectly."

However, excision surgery is still wildly inaccessible. Many endometriosis specialists who perform this particular surgery opt to go private and not accept insurance because insurance rarely adequately compensates surgeons for their time and skill needed for this particular surgery. I, myself, had to pay $15k out of pocket in 2020 to get excision surgery. Part of this may be because the American College of Obstetricians and Gynecologists (ACOG) has yet to formally recognize the different levels of skill required to perform an excision surgery versis an ablation surgery, allowing insurance companies to get away with wanting to reimburse the same money for both when one of them can literally be as complicated as removing cancer. They also haven't issued new guidelines on management of this disease since 2010.