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What Everyone Should Know About Endometriosis

So many people — women and men — have not even heard about endometriosis. If they have, they know very little about the disease and how it affects the women who live with it.

Granted, this makes sense because women’s health is a sensitive topic that not everyone is willing to open up about. However, the downside of keeping this disease in the dark is that those who have it can struggle for years before discovering what they have, whether they learn from a doctor or from information online.

In any event, endometriosis is painful to deal with—both in the fact that it is physically so severe and that emotionally, it can be stressful to live with a disease that could stand to be talked about far more openly.

To kickstart a discussion about this disease, we posted on the Endometriosis.net Facebook page, asking our community to finish this sentence:

“I wish people understood that endo ___.”

Nearly 70 women in the community shared about their experiences with endo, and here is what they had to say.

“Is a real disease the pain is real.”

Several in the community shared that endometriosis is a disease that not everyone understands—and many commonly dismiss as just a painful period. Painful, yes. But endometriosis is so much more complicated than just a period, and the pain lasts longer than typical cramps or a menstrual cycle. It’s far worse than most people imagine.

“Endometriosis is very painful.”

“Is a real disease the pain is real.”

“Is NOT just a bad period!!!”

“Is a debilitating disease.”

Endo emotionally & physically impacts all facets of life

In fact, for many women in the community, endometriosis is painful in a way that is debilitating. Because the pain is so severe and ongoing, it can be distracting, limiting your ability to participate in work and in life. Plus, because coworkers and friends likely don’t understand the extent to which the disease affects you, it can lead to further complications, including feeling excluded and misunderstood.

“Is a debilitating disease, and I can only do so much with extremely low energy. I am in constant pain in every inch of my body. Please be patient with me—I’m trying my best.”

“It is a multi-faceted disease that causes incapacitating pain & symptoms, and can rob you of your quality of life.”

“Affects all aspects of your life.”

This disease is also more than the physical symptoms—which are many. In addition to the cramping, the massive bleeding, the back pain and other physical symptoms, it also takes a toll on emotional health. Women with endo are left wondering when the symptoms will strike again, or when and if they will ever let up. All of this can make it a challenge to make plans or want to follow through on things if you know you might be in excruciating pain.

“Is a serious disease that affects every aspect of your life. It’s debilitating and extremely difficult to live with.”

“Makes it so that you are crippled from the inside out. It’s definitely physical and it affects you psychologically.”

“Can cause a ton of other health issues that you would never imagine in a million years. Random conditions that you’d never imagine can be caused from it.”

Strikes without warning

“It’s unpredictable.”

One of the hardest aspects of endometriosis is that it strikes without warning. Some days the pain or blood flow might be fine, and then the next day it can be disastrous. Part of what makes living with endo so challenging is that you can’t plan for what life will look like from day to day.

“It has a mind of its own. It’s unpredictable. It can take over your life. It affects your mental health and wellbeing.”

“It’s not easy to control and can be unpredictable ... but having supportive family and friends it helps.”

Not your normal kind of tired

“Makes me feel tired all of the time!”

So many women with endo shared that they feel tired a lot—which, makes sense for so many reasons. Periods in general leave women with low energy, and endometriosis drags on the symptoms and pain of a period, and often plagues women with severe bleeding. These things can lead to feeling extremely fatigued all of the time. It’s a symptom worth mentioning to your doctor, and worth taking into consideration day to day. It may mean giving yourself more time to rest or not packing your schedule as tightly as you would like in order to allow more time for self-care.

“Makes me feel tired all of the time! I have an inside joke among my friends that I’m obsessed with taking naps. Endo causes cramping, bloating, bladder and bowel issues throughout the month every month and not just during my periods.”

“Causes extreme pain and fatigue.”

A delayed diagnosis

“Has made me distrust people in the medical field.”

For many women, the experience of getting the right diagnosis took years. Many doctors do not know how to correctly identify or treat this disease, which leads to additional pain and suffering from enduring countless doctors appointments. However, the good news is that all it takes is the right doctor to make the right diagnosis, and from there, some, if not many, cases can be cured by surgery. In any event, at least having the right diagnosis can help you feel not alone in this journey with endo.

“Has made me distrust people in the medical field because of a select few who have significantly ‘dropped the ball’ in my life. Has caused me to struggle with heart-wrenching infertility issues. Has caused me years of agony and suffering (started menstruating at age 11 and was not diagnosed until age 29). Has affected every aspect of my life.”

“Has very few qualified specialists.”

We want to say thank you to everyone who opened up and shared about living with endometriosis. We appreciate your willingness to talk about something so personal in the effort to build community and foster more understanding.

How about you? What do you feel everyone should know about living with endo? Please help to keep the conversation going & share in the comments below.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Endometriosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Community Poll

Do you make any endo preparations when you know you are attending a BBQ, party, or a day at the beach?