Imagine this: You’re talking to your doctor about insane period cramps that caused you to miss SoulCycle and your weekly girls’ brunch. You tell her that the pain is just too much and demand to know why. After all, anything that causes you to miss bottomless mimosas has got to go. She throws down some heavy words like “ovarian cysts” and “endometriosis.” Um, what? It’s all too much to take in when you’re sitting in a paper gown with your legs in stirrups, having your vagina poked at. Not to worry, lady. We’ve got you covered.
According to the American Society for Reproductive Medicine, up to 10 percent of women have endometriosis. So you’re not alone in this. But what exactly is endometriosis, what are the symptoms, and how in the world did you get it? Good questions.
What Is Endometriosis?
Endometriosis is a common condition that affects women of all ages, especially during their reproductive years. Basically, endometriosis occurs when the tissue that normally grows inside your uterus (the endometrium) grows outside your uterus, on other pelvic organs. Most often, it attaches to your ovaries, fallopian tubes, or the tissue lining your pelvis.
When you ovulate, your ovaries release an egg into your fallopian tubes to await fertilization. If it doesn’t become fertilized, the egg dissolves into the lining of your uterus, which breaks down and is released as blood. In other words, you start your period. When you have endometriosis, this still happens. Except that, since the displaced tissue has no way to exit your body, it becomes trapped.
If your ovaries are involved, cysts called endometriomas can form. The surrounding tissue can become irritated and cause pain, especially during menstruation.
What Are the Symptoms of Endometriosis?
Now that you understand a bit more about what endometriosis is, let’s take a look at some of the symptoms that can happen when your endometrium decides to do its own thing.
- Painful periods. Most commonly, women with endometriosis have some pretty serious period pain. This is called secondary dysmenorrhea and can include pelvic pain, cramping, lower back and abdominal pain. More than 20 percent of women with endometriosis report having chronic pelvic pain—before, during, and after their periods.
- Pain during sex. Sex is supposed to be fun and feel great, but for women with endometriosis, this is often not the case. Some describe it as a sharp jabbing sensation or a deep ache. While some women only feel this kind of pain close to or during menstruation, others say that they feel it all month long. What happens is that the scarring and nodules formed by the displaced endometrium are stretched and pulled during intercourse. This makes for painful sex and, for a lot of couples, emotional pain.
- Infertility. Between 30 and 50 percent of women with endometriosis may also experience infertility. What causes this varies between individuals and depends on the severity of the condition. The anatomy of your pelvis can be distorted, your fallopian tubes can be scarred, the hormonal environment of the eggs can be changed, and the quality of your eggs altered. If you have babies on the brain, this can feel really scary. Thankfully, there are treatment options (which we’ll go over shortly).
- Painful urination or bowel movements during your period. This happens when the endometrium grows on parts of your small intestine. If this is one of your symptoms, understand that a doctor can easily misdiagnose it as irritable bowel syndrome, celiac disease, or acute appendicitis, because the symptoms are nearly identical.
- Other symptoms such as fatigue, diarrhea, constipation, bloating, or nausea. While these may seem like normal menstrual pains, endometriosis often causes them to feel more severe. Keep in mind, though, that the severity of your pain isn’t always a good indicator of how serious your condition is. If you’ve been diagnosed with endometriosis or suspect that it may be the cause of your period pain, it’s important to consult with your doctor about possible treatments so you can get back to living your life.
What Causes Endometriosis?
Despite understanding the symptoms, researchers don’t know the exact cause of endometriosis. There are some theories, of course, but none are definitive. Genetics are believed to play a role in developing endometriosis, with women who have a close female relative with it being 5 to 7 times more likely to have it themselves. Other possible causes may include:
- Retrograde menstruation. This occurs when menstrual blood flows back through the fallopian tubes, instead of outside the body.
- Embryonic cell transformation. During puberty, estrogen may transform the embryonic cells into endometrial cell implants.
- Embryonic cell transportation. This happens when your lymphatic system moves endometrial cells into parts of your body other than the uterus.
- Immune-system disorders. If you already have an immune-system disorder, your body may not be able to recognize and destroy endometrial tissue that grows outside of your uterus.
What Is the Treatment for Endometriosis?
While there is speculation about what the cause of endometriosis is, there’s rarely a way to say “This is why you have it.” Instead, your doctor is more likely to work toward finding treatments for your symptoms. Some of the treatments include lifestyle changes like exercise, nutritional and diet changes, a change in birth control, and more involved measures like hormone therapy and laparoscopic surgery. It’s impossible to know which treatment is best for you, which is why you absolutely need to have a conversation with your doctor.
It can be frustrating and overwhelming to go through this, yes, but know that there are options and that you’re not alone in the experience. Talking about what you’re going through with your doctor, hormonal health practitioner, your family, and your friends can help you create a support system. While endometriosis itself is difficult to manage, there are many women’s groups and resources that are actively providing information and raising awareness and funds to promote research towards a cure. The sooner you take action, the sooner you’ll get back to Sunday brunches, cycling classes, and living your amazing life.