The Endometriosis Facts Every Woman Needs to Know

There’s a lot of misinformation out there when it comes to women’s health. A lack of general knowledge on certain facts and conditions, both among health professionals and patients, can make receiving the right diagnosis and treatment much more complicated.

This may be one reason why endometriosis is so difficult to diagnose. Many women aren’t aware of its symptoms, and therefore don’t know the right questions to ask their doctors during appointments. Having the right information before you speak with your physician can ensure you’re getting the help you need. Here are the facts you need to know.

1. Doctors know what endometriosis is — but not why it happens

Endometriosis is a well-understood disease without a known cause.

Its root cause is still a mystery. | iStock.com/YakobchukOlena

According to Endometriosis.org, the condition develops when tissue from the lining of your uterus grows in other parts of the body. It can develop on the ovaries, fallopian tubes, bladder, intestines, colon, appendix, and other areas in and outside the pelvic cavity. Normal endometrial tissue breaks down and bleeds as you menstruate. When this tissue grows anywhere but your uterus, it behaves the same way — which is why women often experience common symptoms like pain and bleeding more intensely during their periods.

Despite general knowledge regarding what endometriosis looks and feels like, doctors and researchers still don’t know what causes it. Healthline outlines a few possible theories as to how tissue from your uterus ends up in places it doesn’t belong. It could be that instead of exiting your body through your vagina during your period, menstrual blood flows back into the fallopian tubes and into the pelvic cavity. Hormones may also play a role in transforming cells outside your uterus into endometrial cells.

Despite not knowing its exact cause, endometriosis diagnosis and treatment, though complex, has come a long way and still has a long way to go.

2. You have to undergo surgery just to get a diagnosis

Surgery is the only way to properly diagnose endometriosis.

It takes more than a quick exam to diagnose endometriosis. | iStock.com/megaflopp

The Endometriosis Foundation of America says it takes an average of 10 years from the time a woman starts exhibiting symptoms to receiving a diagnosis in the U.S. A simple pelvic exam or blood test isn’t enough to determine whether or not you have endometriosis. Instead, women have to undergo something called a diagnostic laparoscopy. According to WebMD, this surgery involves inserting a tube into a small cut in the abdomen. A surgeon will remove a tissue sample and send it to a lab to have it analyzed. That analysis can confirm whether you have endometriosis or a condition with overlapping symptoms.

Unfortunately, many women are often misdiagnosed, delaying proper diagnosis and treatment even further. Conditions like irritable bowel syndrome and ovarian cysts share some of the same symptoms you might experience with endometriosis. Make sure to discuss all your symptoms with your doctor so they can use the proper diagnostic tools to help you.

3. Endometriosis goes beyond painful periods

Endometriosis can cause women a lot of pain.

Painful periods are only one of many possible symptoms. | iStock.com/diego_cervo

The best word to describe how endometriosis feels is “painful.” This pain doesn’t just happen during a woman’s menstrual cycle, though. Pain, along with other frustrations, are often ongoing, and affect multiple segments of a woman’s life. According to Mayo Clinic, symptoms can range from period pain to bleeding between periods to infertility. Some women also experience pain during intercourse and bowel movements. That’s not all. You may also experience bloating, constipation, diarrhea, and/or nausea, especially during your cycle.

To make things worse, the intensity of your pain doesn’t reflect the severity of your condition. You might experience severe pain and only have a mild case; you could experience little pain or no pain at all and have an advanced form of endometriosis. If you’re experiencing any symptoms, see your doctor to discuss next steps to diagnosing and managing your pain.

4. You can get pregnant — but pregnancy isn’t a cure

Pregnancy is possible for those with endometriosis, but it is not a cure.

Many women have fertility issues as a result. | iStock.com/shironosov

Endometriosis makes it hard for many women to conceive — but that doesn’t mean it’s impossible. According to Healthline, about half of the women who experience endometriosis symptoms report having trouble getting pregnant. You’re more likely to struggle if your condition affects your ovaries or fallopian tubes. However, there are ways to increase your chances of getting pregnant, like IVF, or removing endometrial growths that might be interfering with the process. Your doctor can refer you to an infertility specialist if you have endometriosis and are having difficulty conceiving.

That being said, remember that endometriosis is not just a problem during your period. The American Pregnancy Association says pregnancy is not a cure. It can, however, relieve symptoms in some women — though this relief is only temporary. There isn’t any cure for this condition — not even a hysterectomy can erase all symptoms. Once you’re diagnosed, treatment, management, and sometimes surgery are your best options.

5. Exercising might improve your symptoms

Exercise might help relieve pain from conditions like endometriosis.

Exercise can be a natural pain reliever. | iStock.com/grinvalds

Can a little fitness relieve endometriosis pain? It’s possible. There isn’t much research on exercise and endometriosis pain yet. However, Everyday Health does note that physical activity promotes the release of endorphins in the body. Endorphins are like your body’s natural painkillers. Drugs like morphine actually mimic the way endorphins behave in your brain, making you less receptive to pain and discomfort.

Before you start a new exercise regimen, speak with your doctor to make sure you know the best way to begin. Exercising too intensely when you aren’t used to it increases your risk of injury. If, for whatever reason, physical activity makes your pain worse, speak with your doctor.

6. There’s no evidence that diet helps … or that it doesn’t

Healthy eating can improve your life in many ways.

Diet isn’t a cure, but it could help you feel better. | iStock.com/guruXOOX

According to the Center for Young Women’s Health, there isn’t any scientific evidence supporting theories that a certain way of eating can improve endometriosis symptoms. While some experts believe anti-inflammatory foods might help relieve symptoms in some women, no two women experience endometriosis, its symptoms, or its treatments the same way. Some women might respond positively to changes in their diet. Some women might not notice any difference at all.

However, healthy eating can’t hurt. Many foods categorized as anti-inflammatory, like fruits, vegetables, healthy fats, and some herbs, have benefits besides fighting inflammation. Just because there isn’t proof that a healthy diet can improve your symptoms doesn’t mean you can’t eat healthy anyway. Even if it doesn’t help in that area, it can improve your health in other ways, making it easier to cope with the symptoms you can’t shake.

7. There is no cure — but your symptoms are manageable

woman in sportswear doing stretching while sitting on the floor

There’s no way to fully cure this condition. | iStock.com/g-stockstudio

According to the NICHD, there are three treatment routes a woman with endometriosis can take to manage her pain: medication, hormone therapy, and surgery. Both anti-inflammatory medications and hormone therapies can offer long-term relief to help you tolerate mild pain from day to day. Surgery is a more invasive, short-term solution, but it is often used to treat more severe pain. Discuss the benefits and risks of all these options with your doctor before you decide which treatment method is best for you.

Though there is no cure, and we still don’t know why it happens, endometriosis doesn’t have to dominate your existence. Getting diagnosed, though a challenge, may be the biggest hurdle you have to clear before you can finally find relief. It’s painful, and there’s no set of universal directions to guide you through your own experience. But recognizing the symptoms, speaking with your doctor, and finding a treatment that works for you are all important steps to making endometriosis a small part of your life, instead of letting it consume your existence.

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