Periods are uncomfortable for lots of women, but for many women with endometriosis, they are a special kind of torment. This sometimes-debilitating disease can impair quality of life and even fertility, but there are ways to treat it.
Brian Brimmage, MD, an OB-GYN who delivers babies and performs gynecologic surgery at UNC Rex Hospital, shares more about how to identify endometriosis and how to get help.
What Is Endometriosis?
First, the basics: The endometrium is the layer of tissue that lines the uterus and sheds every month when a woman has her period. When a woman has endometriosis, some of that endometrial tissue goes rogue and grows outside the uterus.
“When endometrial tissue implants itself somewhere else, it then responds to the hormones of a woman’s cycle the same way the tissue lining the uterus does, and it will grow the same way. It will shed or bleed, and it causes a particularly severe inflammatory response during the part of the period when a woman is bleeding,” Dr. Brimmage says.
The patches of tissue can be found on a variety of places, most commonly:
- Ovaries
- Fallopian tubes
- Outside of the uterus
- Bowels
- Bladder
- Abdominal/pelvic cavity (particularly between the uterus and the rectum, or between the uterus and the bladder)
Endometriosis is thought to affect between 10 and 15 percent of women of childbearing age. It’s most common in women in their 30s and 40s but can happen to any woman who menstruates. Risk factors include starting your period at a younger age, having a family history of endometriosis, and experiencing frequent, long or heavy menstrual cycles.
Signs and Symptoms of Endometriosis
The most common symptoms of endometriosis are abdominal and pelvic pain that tends to start a few days before the menstrual cycle begins. This pain typically persists for the duration of the period and possibly a few days afterward.
“If someone finds that they have somewhat moderate to severe pain every month with their cycles, particularly getting worse over time, pain throughout their cycle to the point that they regularly need over-the-counter medicine, and pain that persists after the period is over, that would make me suspicious that it could be endometriosis,” Dr. Brimmage says.
Pelvic pain affects about 75 percent of women with endometriosis and is typically felt in the abdomen and lower back. The pain can be sharp and stabbing or dull and crampy; it can be constant for days on end, or it might come and go. In other words, the type, severity and length of pain symptoms can vary widely. In fact, some women with endometriosis have no symptoms at all.
“I’ve had patients who had endometriosis widespread, all throughout their abdomen, and they weren’t having any pain at all. Sometimes we find it incidentally because of another surgery,” Dr. Brimmage says. On the other hand, “sometimes tiny, microscopic implants (of endometriosis tissue) can still cause severe pain.”
Researchers are still studying what causes endometriosis, Dr. Brimmage says.
Additional signs and symptoms can include:
- Pain during sexual intercourse
- Pain during bowel movements or while urinating (during period)
- Heavy periods
- Spotting between periods
- Fatigue
- Gastrointestinal problems
Complications from Endometriosis
Untreated endometriosis can make it difficult for women to get pregnant. Between 10 and 15 percent of women with endometriosis experience infertility as a result of the disease.
“The fallopian tubes are very delicate and they serve as a conduit for the egg and sperm to come together. If endometriosis implants on or around the tubes, it can cause damage and scarring to the tubes, making fertilization more difficult,” Dr. Brimmage says.
If endometrial tissue implants itself on the bowel or on the rectum, it can cause gastrointestinal problems during a period. Rectal bleeding and pain during bowel movements can also occur. If tissue implants on the bladder, it can cause UTI-like symptoms including bladder pain or pain when urinating during menstruation.
How Endometriosis Is Diagnosed
If left untreated, the “misplaced” endometrial tissue will continue to grow and spread. The disease is not life-threatening, but pain and complications need to be addressed.
The only way to definitively diagnose endometriosis is by taking samples of the tissue surgically, but typically, the symptoms can tell the doctor what’s probably going on without surgery, Dr. Brimmage says.
“For most people you can suspect it’s endometriosis based on the symptoms they are having and then go straight to treatment, without needing to subject them to surgery,” Dr. Brimmage says. “The treatment will likely be the same whether it is endometriosis causing painful periods, or one of a variety of other conditions that can also cause painful menses, so after assessing the symptoms we can usually just start treatment immediately.”
Treatments for Endometriosis
Unfortunately, there is no cure for endometriosis, but treatment can help reduce pain.
“Women with endometriosis generally will need to be on some kind of treatment until they go through menopause, usually around 51 years old, or if they want to take a break to try to get pregnant,” Dr. Brimmage says.
Doctors start with conservative measures, such as over-the-counter pain relievers ibuprofen (Advil, Motrin) and acetaminophen (Tylenol).
Hormonal birth control pills, which contain synthetic estrogen and progesterone, can help, too. By skipping the placebo pills that prompt menstruation, a woman with endometriosis can slow the growth of endometrial tissue and prevent shedding of the tissue. This can greatly improve pain and reduce heavy bleeding. There are also newer medicines that try to selectively target endometrial tissue, so as to minimize some of the side effects that are common with hormonal birth control pills.
If these measures don’t improve symptoms, surgery to remove the endometrial tissue is an option. This is typically done laparoscopically, so it’s minimally invasive and easier to recover from than open surgery.
If a woman with endometriosis is trying to get pregnant, the goal is to keep her pain tolerable while skipping hormonal treatments, allowing her to ovulate, Dr. Brimmage says.
“If you feel significant pain around your period, don’t assume it’s just normal and nothing can be done,” Dr. Brimmage says. Instead, track your symptoms and reach out to your doctor.
“It could be endometriosis, and if it is, we can help,” he says.
If you are experiencing symptoms of endometriosis, talk with your doctor. If you need a doctor, find one near you.