Periods aren’t fun, but they’re a natural part of life. Some months are lighter or heavier than others; some are more painful. Some months you feel like the Stay-Puft Marshmallow, bloated with raging hormones.
However, if you’re falling into a routine each month with a “bad period,” you may not want to chalk it up to your menstrual cycle. You could have endometriosis, an often-painful medical disorder that affects more than 6.5 million (at least 11% of) women in the United States.
“Endometriosis is a hormonally affected medical condition in which tissue similar to the uterine lining is found outside the uterus,” said Nichole Mahnert, MD at Banner - University Medicine Women's Institute. “Endometriosis is most commonly found on the uterus, ovaries and tissue lining the abdomen.”
Here are six things to know about endometriosis from symptoms, causes and treatment to how it can affect your fertility.
The causes of endometriosis are not fully known
“Endometriosis is a chronic inflammatory condition with multiple theories for why it may start, but the exact cause is unknown,” Dr. Mahnert said. Some of the possible causes are:
- Retrograde menstruation or backward periods. This occurs when menstrual fluid flows backwards into the fallopian tubes instead of leaving your body through the vagina. Cells in the fluid stick to the pelvic walls and surfaces of pelvic organs, where they grow and continue to thicken and bleed over the course of each menstrual cycle.
- Genetics. Endometriosis tends to run in families.
- Immune system problems. The immune system of some women allow endometriosis to develop by failing to control or stop the growth of endometrial tissue outside of the uterus.
On average, it can take seven years to be diagnosed with endometriosis
Symptoms of endometriosis can vary from woman to woman, which makes it a tricky condition to diagnose.
Sometimes symptoms are subtle. However, common symptoms of endometriosis include:
- Painful, heavy and irregular periods
- Chronic pelvic pain
- Pain with sex (intercourse)
- Ovarian cysts
The added challenge is that many of these symptoms aren’t necessarily specific to endometriosis. You may have some of these symptoms for other reasons. Thus, why it is often misdiagnosed.
“Often women see multiple health specialists for different symptoms such as gastroenterology or urology,” Dr. Mahnert said. “And also, unfortunately, at times, women’s symptoms aren’t validated. Menstrual pain can be considered normal by physicians or patients and their families, and therefore dismissed.”
Endometriosis can only be diagnosed through surgery
“The gold standard to diagnose endometriosis is minimally invasive surgery with laparoscopy, an outpatient procedure where we put a camera into a small incision in the belly to look at pelvic organs and take a sample of tissue (or biopsy) to have it evaluated by a pathologist,” Dr. Mahnert said.
For some women who do not want or can’t have a laparoscopy, the diagnosis is based on symptoms.
“It can be difficult to access a surgical diagnosis depending on where you live, insurance coverage, finding a skilled surgeon or it may not even be offered as an option,” Dr. Mahnert said.
Endometriosis has four different stages
Medical experts group endometriosis into stages based on things such as the location, depth, size and amount of tissue. What kind of endometriosis you have plays a role in your symptoms and treatment.
These stages are:
- Stage 1 – Minimal
- Stage 2 – Mild
- Stage 3 – Moderate
- Stage 4 – Severe
“Stage 1 is associated with a few endometriosis lesions that are collectively small, less than 1-2 cm,” Dr. Mahnert said. “Stage 4 is the most widespread and is associated with severe scarring, ovarian masses (endometrioma) or endometriosis on other organs such as the intestines.”
Treatment involves a holistic approach
It is important for providers to take a holistic approach to treatment. Women with endometriosis may also have other conditions and symptoms that are not caused by endometriosis but, nevertheless, are associated with the disorder.
The primary treatment for painful periods is to suppress them with hormonal therapy. Most forms of hormone therapy are birth control such as combined estrogen/progesterone or progesterone-only pills, ring, patch, implant and IUD.
“There are other medications specific to endometriosis, such as leuprolide, which have side effects. So they are usually reserved for when other methods don’t work,” Dr. Mahnert said. “In more serious cases, surgical intervention may also play a role in treatment.”
Other treatment options focus on treating pelvic pain associated with other organs, like muscles and nerves, and may involve treatment options such as physical therapy, injections and medications.
“Complementary treatments like acupuncture and mindfulness can be helpful additions,” Dr. Mahnert said. “And, of course, diet and exercise which are important for healthy living, in general.”
[Check out “10 Foods to Eat and Avoid When You Have Endometriosis.”]
Many women can achieve pregnancy with endometriosis
If you have endometriosis, the idea of growing your family might feel a bit overwhelming. While endometriosis can make it difficult to get pregnant, there are many treatments to help you get pregnant.
Talk to your health care provider. They may recommend you see a fertility specialist before you start trying to get pregnant.
Endometriosis can be a very challenging disorder to cope with, but with the right care, it doesn’t have to be.
It’s always a good idea to track your symptoms, so you can discuss in more depth with your health care provider. For example, keep track of when the pain started, if it’s associated with other events, life changes, etc. What makes the pain worse or better? Is the pain associated with other symptoms?
To find a health care provider near you to discuss your symptoms and possible plan for treatment, visit bannerhealth.com.
For other gynecology-related topics, check out:
- Pelvic Adhesive Disease Could Be Causing Your Infertility
- Is My Period Normal? 4 Common Questions Answered
- How to Recognize and Treat an Ectopic Pregnancy
- Are You at Risk for Uterine Fibroids?