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

A hysterectomy is not a cure for endometriosis, and other things you should know.

Hello, world! If you're reading this, you might already know that I have spent a good portion of my time here at BuzzFeed writing about what it has been like for me to live with endometriosis and other pelvic floor conditions for the better part of 15 years now. I am not alone in this. The statistics are that 1 in 10 women live with endometriosis (though not only women live with endometriosis — trans individuals and nonbinary individuals exist!), which means roughly ~200 million people worldwide.

@laraeparker / Via Instagram: @laraeparker

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.

March is Endometriosis Awareness Month, and this year, I wanted to compile a list of some of the information we do have about this disease. So in an effort to get the latest information — and because I genuinely might lose it if I see one more article suggesting that a hysterectomy is a cure for endometriosis — I compiled a list and then spoke with Dr. Matthew Siedhoff, Vice-Chair of Gynecology at Cedars-Sinai and excision surgeon, to get the latest information on this horrific disease.

1. Endometriosis is not the lining of the uterus.

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Endometriosis is commonly referred to as the lining of the uterus shedding and appearing in other places in the body. But this is incorrect. Endometriosis is pathologically different than the endometrium (lining of the uterus.) Technically, endometriosis is tissue that is similar to the lining of the uterus.

Dr. Matthew Siedhoff describes this to his patients as, "tissue that is similar to the endometrial tissue — so, that’s the inside lining of the uterus, the part that sheds with a period— growing in places it’s not supposed to, so outside of the uterus. And that tissue that's similar to the lining of the uterus can be found pretty much anywhere in the body — but mainly in the pelvis or abdomen or even sometimes outside of that area. Common locations would be the bladder, the fallopian tubes, the ovaries, the large and small intestine, and the appendix. And it causes pain, we think, because it’s stimulated by hormones the same way that menstrual tissue is. But when that stimulation occurs outside the uterus, it causes inflammation. And that, we think, is the source of pain for endometriosis. It doesn’t necessarily come from inside the uterus, and it behaves a little bit differently in that it also makes its own hormone production. We don’t fully understand that. But it definitely is different than just normal endometrial tissue inside the uterus."

2. 1 in 10 people born with a uterus have endometriosis.

@thisisendoglobal / Via instagram.com

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.

3. There are some common symptoms like pelvic pain, digestive issues, and painful sex. But there are also a whole other slew of symptoms that can be a sign of endometriosis.

@the_endo_space / Via Instagram: @the__endo__space

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.

4. It requires surgery to be definitively diagnosed with endometriosis, as endometriosis does not always appear on MRIs, CT scans, or ultrasounds.

@thisisendoglobal / Via Instagram: @thisisendoglobal

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."

5. And there is no such thing as "being too young to have endometriosis." Endometriosis does not have a minimum age requirement.

@endowarriors / Via Instagram: @endowarriors

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.

6. When talking about surgeries for endometriosis, there are two surgeries that are most commonly used in the treatment of endometriosis: ablation surgery and excision surgery. Excision surgery is currently considered the "gold-star" treatment for endometriosis.

@endowarriors / Via Instagram: @endowarriors

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."

7. And, according to Dr. Siedhoff, removing endometriosis during a proper excision surgery "can be as difficult or more difficult than surgery for cancer. It can be that aggressive in certain cases. So, finding someone who is experienced with the whole range of how endometriosis can present, I think, is a huge barrier to care."

Instagram: @featherstone_

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.

8. But even if your pathology comes back as not having found endometriosis — unfortunately this doesn't mean that you don't have endometriosis, which is why symptoms are so important for doctors to pay attention to.

@laraeparker / Via Instagram: @laraeparker

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."

9. Pregnancy is not a cure for endometriosis.

Instagram: @endogram

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.

10. And neither is menopause. Which brings me to discussing the most commonly prescribed pharmceutical drugs in the treatment of endometriosis: Leuprorelin (or Lupron Depot) and Orilissa (or Elagolix).

Orilissa / Via orilissa.com

While many patients may find relief from some of their most debilitating symptoms with these pharmaceuticals — there isn't much to suggest that these drugs treat endometriosis. They treat the symptoms. I spoke with Dr. Siedhoff a bit more in depth about these drugs. But before we get into it, I just want to be clear: If you were prescribed these drugs because you don't have the means to get an excision surgery and they are giving you relief, you deserve that relief. Full stop.

Lupron has historically been one of the most commonly prescribed medications for endometriosis patients, and it essentially puts your body into a chemical menopause. According to Dr. Siedhoff, he "almost never uses these medicines" in his practice. He went on to tell BuzzFeed, "Some women feel all of the symptoms of menopause with Lupron — things like hair loss and hot flashes and joint pains and insomnia, vaginal dryness, pain with intercourse. And some of that can be helped by giving back more hormones in the form of a progesterone or a birth control pill, which can also help protect bones, because putting somebody into medical menopause causes bone loss. Which is also a reason why these drugs can’t be used long-term. So although someone may experience relief in some of their symptoms, It’s at a big trade-off with all those other symptoms. And when you compare treatments with a better side effect profile — for example, a progesterone IUD or oral progesterone or just standard birth control pills — they don’t really perform better than those hormonal treatments that have fewer side effects."

And Dr. Siedhoff feels the same way about the newest medication, Orilissa (Elagolix). "It’s basically inducing menopause in a similar way that Lupron does. It’s just a oral medicine rather than an injection. So, you could stop it a little bit easier, and it’s a bit easier to take for the patient. Right now, we have the data that justified getting it approved by the FDA, which shows that it can improve pain associated with periods and pelvic pain in general. But we don’t have great comparative data with other medicines that have fewer side effects. So, with all of that being said, I’m sure there are some people that feel better on it and are doing well, but I don’t think it’s very often. And I really don’t use them. And like I said, you can’t use them for long-term because of the dangers with with bone density and bone loss."

11. And a hysterectomy is not a cure for endometriosis because endometriosis, by definition, exists outside of the uterus. It is tissue that is *similar* to the lining of the uterus showing up other places in the body.

@midwestendoassociation / Via Instagram: @midwestendoassociation

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."

12. And as far as birth control goes — we really don't know whether or not this definitively stops the spread or growth of endometriosis.

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I did my best to find a definitive answer as to whether or not birth control can stop or slow the spread/growth of endometriosis, and the best I came up with was that while you are on continuous birth control, you can see a reduction in pain, symptoms, and disease, and that the lesions can “atrophy” but the second you stop it, it all returns. It’s an artificial state. When I asked Dr. Siedhoff about birth control (pills or IUD, specifically) and if it actually slowed the spread or prevented new endometriosis growth, he said, "I don’t think we have a definitive answer of whether or not birth control actually prevents new endometriosis from forming, or if it just kind of keeps the symptoms under control. What we do know is that in people who can take or can tolerate hormonal treatment, it seems to result in fewer symptoms and need for additional surgery. But we don’t know if that’s because it’s actually preventing growth."

The one place we do have better information, though, is when patients have a cyst of endometriosis in the ovary. It’s called an endometrioma. And according to Dr. Siedhoff, there’s reasonably good data that suppressing ovulation with birth control pills or an IUD decreases the chance of an endometrioma coming back.

13. Endometriosis can create its own blood supply and produce its own hormones.

@samanthahudeck / Via Instagram: @samanthahudeck

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."

14. We still don't know what causes endometriosis. But people have theories.

@catmccormack / Via Instagram: @justagirl_fromjersey

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."

15. Is endometriosis hereditary? According to Dr. Siedhoff, there is a familial component.

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"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."

16. Oftentimes, endometriosis is still being diagnosed in a staging system — but endometriosis stages have no correlation with the amount of pain a person experiences with this disease. The same can be true about how much or how little endometriosis is present in someone's body. Some people with a tiny amount are in debilitating pain daily, others may have it extensively and have no idea.

@endowarriors / Via Instagram: @endowarriors

"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."

17. There is still no cure for endometriosis. But excision surgery is considered the "gold star" treatment of this disease.

@what_kayleigh_did_next / Via Instagram: @what_kayleigh_did_next

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.

That's all I've got for you today! What did I miss? Anything you want to add? Let me know below. And lastly, if you live with endometriosis, I just want you to know what an absolute warrior you are. You shouldn't have to be. But you are, nonetheless.