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    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.

    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.

    An image of endometriosis lesions
    Ogphoto / Getty Images

    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.

    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.

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

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

    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.

    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."

    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.

    9. Pregnancy is not a cure for endometriosis.

    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).

    An image of the drug "Orilissa"
    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.

    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.

    An image of an IUD
    Carol Yepes / Getty Images

    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.

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

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

    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.

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

    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.

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