Ten Things You Need to Know About Endometriosis

1) The regularly-used definition is WRONG

The actual definition itself is wrong. It is based on disproven information from long ago. The name itself literally means “condition related to the inside of the uterus,” and many doctors will still say that endometriosis comes from the uterus even though the tissues are different.

Endometriosis has been found in many living beings who do not and never have had uteruses. A new word technically should probably be invented, but until then, we just need to make sure the definition we use is changing even if the word itself isn't. Endometriosis is frequently referred to as just a menstrual condition affecting women of reproductive age. Like we said though, it doesn't even have to do with uterus lining and the tissues are not uterine tissues. Also, it can affect organs that are not even part of the “reproductive” system. That’s right, limiting it to a menstrual condition misses the fact that endometriosis has been found in every major organ system of the body. A better definition? It is a “chronic, systemic, and inflammatory condition. This aims to ensure the development of effective diagnostics and treatments reflect endometriosis' full clinical reality (i.e., not solely a reproductive condition) as it can affect every major organ in the body.”

2) Endo is so much more than just bad periods

It is true, the first symptoms many people experience are bad periods. That being said, there are so many other symptoms that are not bad periods. Sometimes, people may never have a bad period in their life. They may never have other crazy pain or symptoms, but then have inexplicable infertility issues. Endometriosis is a very inflammatory condition, and can contribute to issues such as pain that is not with the menstrual cycle, gastrointestinal problems, bladder problems, et cetera. Even when symptoms are limited to the menstrual cycle, sometimes there will be issues not commonly explained by endometriosis such as cyclical bleeding or pain outside of the pelvic region, including lung collapses in people who have endometriosis on their lung.

3) How many people it affects

For a long time, endometriosis was thought of as a rare condition. Then, we started figuring out that it wasn't very rare to the tune of one in ten women having the condition. Then, we started figuring out that there were many cases that did not fit the typical mold of what people thought endometriosis was, leading us to believe the numbers are possibly closer to one in seven people of the female sex having endometriosis. Now, we are realizing that many populations may have endometriosis that have not been typically well-served or well-studied, so the numbers may actually be even higher. These are just the people who have or may have endometriosis themselves. Think about all of the people in their circle though. You know somebody with endometriosis, probably several people. Think of how it affects their friends, family, partners, work situation or school situation, etc. How is this affecting the world? If a person cannot fully participate in society, how many people is it really affecting?

4) There is a massive diagnostic delay

There are so many myths about endometriosis that are prevalent even in the majority of medical offices. In addition to that, it is still taboo to discuss issues even remotely related to menstruation. People simply don't want to talk about them, especially young people. A lot of the time, we are not given the support (perceived or actually) that we need to be able to speak up, nor are we given the correct terminology or the correct education to know what should even be normal in our bodies. Plus, the idea that our pain is normal keeps getting passed down from one generation to the next. When we have issues, we keep quiet because we feel like we cannot speak up, we don't know how to speak up, or we don't think we need to speak up because surely what we're going through is what everyone is going through and we’re just not handling it well. Research funding is painfully limited and when studies are done, they are often oddly unhelpful. Medical schools are outdated so doctors learn incomplete or even wrong information so they dismiss patients repeatedly. Drug companies who have life-long patients make gobs of money (yep, we said it!) These beliefs and boundaries to care (as well as others) contribute to a 6-12 year diagnostic delay. Some people are simply never diagnosed. It is a long, grueling process for diagnosis much of the time.

5) Endometriosis can impact all ages

As we mentioned before, endometriosis for the longest time has been said to affect “women of childbearing age." This is very limiting. First, endometriosis has been actually found in human fetuses, so we know that the tissues can be in the very youngest of us. Symptomatically, endometriosis can start even before a child's first period. Additionally, endometriosis is often said to go away when someone has had a baby. That is also untrue. For some people, endometriosis gets worse after pregnancy. Next, the current definition leaves out people who are postmenopausal but still suffer from symptoms. It is often said that people who go through menopause will no longer have endometriosis. While menopause can help some people with their symptoms sometimes, other times people are still riddled with the adhesions and problems that started before. Thus, all ages from the very youngest of us to the oldest of us can be affected by this condition in some way, and the myths about what will stop endometriosis are running rampant.

6) Birth control does not treat endometriosis

When a person is diagnosed with endometriosis, or sometimes before they even have an actual diagnosis, that person will frequently be prescribed some sort of birth control. The idea behind this is to control the hormones that are driving the endometriosis. For some people, this causes symptoms to be decreased while for others it does not. Some people actually find that their endometriosis symptoms get worse on birth control. Whether symptoms are controlled, everything stays the same, or things get worse, it is important to understand that birth control does not actually treat endometriosis. The disease is not going away with the pills, patch, shot, or whatever else is being given to the patient. It is a Band-Aid and will not slow the progression of the disease.

7) There’s a huge difference between the different types of surgery

Nowadays, most of the surgeries for endometriosis are done as a “laparoscopy” (key-hole surgery). Most of the time though, doctors do a burning surgery called “ablation” or “fulguration” (to make this even more complicated, this kind of ablation is NOT the same as a uterine ablation). These endometriosis “ablations”/“fulguration of lesions” are literally just fancy-pants terms meaning the doc sees an endo spot, burns it, and assumes the endo is now gone. MANY problems with this: 1) if you burn it, the tissues cannot be sent off to a lab to confirm what it is, 2) docs are not taught to look for the many ways endo can look (more than a classic dark spot), 3) burning leaves material behind which can regrow (and maybe even get moved around!), 4) Scar tissue from the burning can encapsulate the leftover disease making it harder to get to in the future, and 5) Burning = repeat surgeries. Repeat surgeries = more scar tissue and adhesions. All of this means ENDO OFTEN GETS WORSE WITH REPEAT SURGERIES.

A better laparoscopic surgery? Excision with WIDE margins by a legitimate endometriosis specialist. Anyone can call themselves this at the moment (but that’s a whole other issue) so look for a specialist who has pretty much devoted their life to endo. (One more note: Excision is being used as a fancy buzzword now for people who don’t know what they are doing, so be highly-critical!)

8) Surgery (with a legit expert) is the only 100% definitive way to diagnose endo

It is true, in recent years tests have been developed to be less invasive. Also, some true endometriosis experts are getting better at using imaging to diagnose endometriosis. That being said, there are too many ways patients can still slip through the cracks without a true endometriosis specialist making a definitive diagnosis via surgery. The takeaway: if you have a chance to use a less-invasive method to seek a diagnosis, perhaps consider it. But if it is negative, don’t write off the possibility of endo yet. The severity of disease, oddly, does not always correlate to the severity of symptoms. So, a visual test or a blood test might miss Stage 1 but a person has horrid symptoms. Patients must always fight for themselves!

9) Hysterectomies do not fix endometriosis

That is right, hysterectomies do not cure endometriosis. In fact, much of the time, endometriosis has nothing to do with a person’s uterus. Endometriosis does have an also-evil twin named Adenomyosis which are frequently mistaken for each other. Adenomyosis involves a very sick uterus itself, so hysterectomies do cure that. Endometriosis, however, can create lesions all over the place, so removing the uterus while spots of disease remain wreaking havoc everywhere else is pretty silly, yet that is often done. Often, endo and adeno occur in the same patient. So if ever you hear that hysterectomy cured someone’s endo, you might wonder if it was adenomyosis instead.

10) Endometriosis impacts EVERYONE in some way. We've thought of TEN types of people. See how many you can identify...

To join the TEN Campaign, just donate $10, Share these 10 Things You Need to Know with 10 people, and invite them to join the campaign, too! Easy peasy, working together to make a positive difference in the world through education and supporting the amazing efforts of AEEP.

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This information is for educational purposes and is not intended to be used as medical advice. Talk to a healthcare professional before making any health decisions.

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About AEEP

Started in 2017, End of Endo Project Inc (American End of Endo Project) was created to bridge the numerous gaps in the healthcare system that cause endometriosis sufferers to be denied timely diagnosis and effective treatment.

After suffering for 18 years with little to no help from the medical community and after countless doctors, useless tests, and ineffective treatments, founder Holly Sanneman finally found the answers and support she needed. Now, years later, she is still enjoying remission from endometriosis, a concept unheard of to most of the endometriosis community due to the vast misinformation about the condition.

American End of Endo Project provides good, easy-to-understand information, a directory of endometriosis specialists and pelvic physical therapists, a fundraising platform for endometriosis care (Yellow Ribbon Pages), and a brand new grant program for endometriosis care (Diana Peterson Williams Memorial Fund). Additionally, AEEP hosts awareness events, participates in the Worldwide Endometriosis March, and speaks with students, scientists, lawmakers, healthcare professionals, and other individuals about the importance of accurate information and support for those who suffer with the condition.

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