It’s good to be educated about our bodies every month of the year, but with Endometriosis Awareness Month observed in March, it’s an excellent time to learn about this condition that up to 10 percent of people with uteruses have—endometriosis.

What is endometriosis?

Endometriosis is when the tissue that lines your uterus grows outside of your uterus as well. This tissue is called the endometrium. During your menstrual cycle, the endometrium tissue builds up, sheds if you have no fertilized eggs, then leaves your body through your period. When this tissue grows outside of the uterus, it still builds up as part of your menstrual cycle, but then it has nowhere to shed and exit the body. Endometriosis develops over time, usually several years after your first period, and affects up to 10 percent of people with uteruses ages 25-40.

What are the symptoms?

Since everyone’s bodies are so different, endometriosis symptoms can be mild to severe and vary for everyone depending on their body. The severity of your symptoms does not indicate the severity of the actual tissue buildup. This tissue can grow on your ovaries, bowel, and pelvis, and comes with a wide variety of symptoms. Because this tissue is building up and isn’t shedding, it can become increasingly painful over time. The most common endometriosis symptom is pelvic pain and cramps. This pain and cramping hit you in the same areas you might feel period cramps, but it’s much more intense. This cramping can be just during your period, but for some people, there’s constant pelvic pain. These cramps aren’t like normal period cramps. Some people experience cramps so intense they can’t go to work or function normally.

In addition to painful periods, other symptoms include pain during or after sexual intercourse, pain with bowel movements or peeing, as well as diarrhea, constipation, and bloating, heavy bleeding during your period, or bleeding between periods, and in some cases, infertility. About 30 to 40 percent of people with endometriosis experience fertility issues. These issues can be discussed with your doctor, and there are options to maximize your fertility with endometriosis.

Because the tissue can grow in several places in your body, it can affect these places in different ways. Another symptom is developing scars on your ovaries and pelvis, as well as adhesions or tissues growing so that they bind your organs together. Because the symptoms are so general, endometriosis can be hard to diagnose initially. People can be misdiagnosed with Pelvic Inflammatory Disease, ovarian cysts, or even Irritable Bowel Syndrome.

Are there treatment options?

Although endometriosis is not curable, there are several different treatment options. The growth of your endometrium outside of the womb is due to varying levels of estrogen in your body. Your changing hormones during your menstrual cycle that promote the growth and shedding of your uterine lining are the exact hormones promoting the growth of this tissue as well. Remember, the only difference is this tissue has nowhere to go once it’s grown. Hormone therapy or hormonal contraception can be used as an effective treatment. Hormonal birth control pills are a popular treatment for endometriosis because they shut down ovulation. If you’re not ovulating, your uterine lining is not building up to shed, so it should stop the growth of this tissue outside of the uterus as well. Any hormones that help stop menstruation could help treat endometriosis. Gonadotropin-releasing hormone agonists and antagonists can be used to treat endometriosis as well. GnRH is used to essentially create early menopause by stopping the production of estrogen in the body. Because it puts you in an early menopause, side effects would include vaginal dryness and hot flashes. This treatment sounds intense, and I’d guess it would likely be used for severe cases. Danazol is another medication that can stop your period and help stop the growth of endometrium tissue. These treatment options can help with pain and help stop tissue growth, but they don’t necessarily help with fertility.

If you are wanting to get pregnant or have a severe case of endometriosis and hormones haven’t helped, surgery is another option. During the surgery, the excess tissue growing outside of the uterus is removed. The surgery is called laparoscopy, uses lasers, and is minimally invasive. Again, this is the only treatment option that can help improve fertility. In extremely severe cases, and if you are not wanting to get pregnant, you could also have a total hysterectomy. This is a surgery to remove your uterus and cervix. This is usually only recommended for severe cases or for someone who knows they do not want to get pregnant. Once your uterus and cervix are removed, you won’t be able to get pregnant because your uterus will be gone.

What is the cause of endometriosis?

The exact cause of endometriosis is not known, which can be frustrating. One theory is that during menstruation the blood flows back into the fallopian tubes, causing build-up, while another theory suggests that hormones transform cells outside of the uterus into ones similar to those inside the uterus, confusing the body. If you experience any of the symptoms listed above, or even just have incredibly painful periods, go see your gynecologist. They will likely do a physical exam and an ultrasound to see what your uterine tissue looks like. Once diagnosed, your doctor will discuss the severity of your case with you. If left untreated, endometriosis can get worse over time because of the continuation of tissue building up. Once your doctor tells you the severity (minimal, mild, moderate, or severe) you can work together to discuss treatment options. Although endometriosis isn’t curable, you can still live a relatively pain-free life with it. If you are planning on having a family and want to maintain your fertility, be sure to mention that to your doctor.

If you suspect you have endometriosis or have incredibly painful periods, speak up and talk to your doctor about it. Intense period pain isn’t normal or something you should live with! It can indicate there’s a deeper issue going on. Talk with your doctor to find a solution.

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