My sister was sick for ten years before she figured out why. Ten years of appointments, tests, procedures, hospital stays and ER visits, research, trying one thing after another, and doctors shrugging their shoulders before sending her on to someone new. She spent ten years gradually feeling worse and worse, to the point that some days she couldn’t even function. No one knew why until one doctor finally brought up that it could be—among other things—endometriosis.
My sister had heard of endometriosis like most of us have—through TV commercials that told women to speak to their doctor about pain, and the few women who had had hysterectomies to rid them of monthly pain. Even her doctors shrugged. One doctor even told her to “use two heating pads and take Motrin.” (The pain was beyond the help of heating pads and Motrin).
Unfortunately, her story is not unusual. Lack of funding, understanding, and research lead to the inadequacy of information for everyone from patients to physicians, and too much misinformation.
So, as a start, here are five things about endometriosis every woman should know.
1. 1 in 10 Women Have Endometriosis
Yes, one in ten women. Chances are, you know someone with endometriosis. Unfortunately, endometriosis doesn’t always present with “classic symptoms” or a case may be in the advanced stages. And with the lack of knowledge about endometriosis, physicians don’t always know to go to it as a diagnosis.
Unfortunately, the only way to truly diagnose endometriosis is through exploratory surgery. Neither endoscopy nor an ultrasound enables doctors to see enough.
2. It’s Not Uterine Tissue; It’s a Mutation of Uterine Tissue
You may have heard that endometriosis is tissue from inside the uterus that grows outside instead. But that’s not entirely true. While it is tissue growing outside of the uterus, it’s a mutation of uterine cells, which is why it grows in areas outside of the uterus.
3. It’s Not Confined to Reproductive Organs
Much of the information out there, and much of the information women have, says that endometriosis is confined to the reproductive organs. And that can be true for some women. But for others, endometrial tissue can be found all over the body. From the kidneys to the stomach, endometrial tissue can grow on organs and even cause them to adhere to one another. In rare cases, endometrial tissue has been found in the lungs, eyes, sinuses, and even in the brain.
Where does the pain come from? Even though the tissue is mutated, it still sheds its lining and bleeds during your cycle, which leads to monthly pain that grows as you reach your period and then tapers off. But because the tissue is in a part of the body other than the uterus, the blood has nowhere to go. Studies have led researchers to believe that pain other times of the month are from scar tissue buildup from the bleeding. Organ adherence can also cause pain and additional symptoms.
4. It’s Not Just About Pain and Heavy Periods
Yes, pain and heavy periods are absolutely part of endometriosis. But depending on which stage the disease has progressed to, it can mean other symptoms, too. including:
- Pain when you urinate or when your bladder is full
- Nausea and vomiting
- Nerve pain
- Shortness of breath
- Brain fog
- Sciatic pain
- Pain in legs
- Sinus issues
Additionally, pain is not an indication of how severe a case is; every woman experienced pain differently and in different areas.
5. It’s Not All in Your Head
Perhaps most unfortunately of all, thanks to all of the factors above coupled with the lack of knowledge of endometriosis for both women and, sometimes, physicians, mean that many women feel like their symptoms are all in their head. You feel so much pain, or symptoms so severe they’re debilitating, yet tests don’t show anything, or your doctor shrugs or even tells you it’s all in your head (yes, my sister had multiple doctors tell this to her). Your mental health starts to suffer.
While this article is not meant to be a diagnosis, please remember that it’s not “just in your head.”
In conclusion: you’re not crazy. People shrug it off because it’s a “woman’s problem,” and have for too long now. Don’t let others and health care providers make you feel crazy. Keep going and ask questions until you have the answers you want.
It’s as the Center for Endocare in Atlanta quoted Shannon Cohn, director/producer of Endo What?, “This disease is a perfect awful storm of many things—societal taboos, gender bias, inaccurate information, untrained physicians, and the undue influence of commercial interests on our healthcare system.” Research, research, research, as we’re doing. Ask questions, find a community . . . and don’t settle for feeling this bad all the time.
It’s time to raise awareness about and change the narrative around endometriosis.