About 11% of all women and about 50% of infertile women have it: a uterine lining that grows in places it shouldn't. The lining, known as the endometrium, can sprawl outside of or within the walls of the uterus. The condition is called endometriosis.
Despite the fact the disease greatly reduces the quality of many women's lives, it remains understudied, said Nichole Tyson, MD, a clinical professor of obstetrics and gynecology at Stanford Medicine.
"It's another topic in women's health where the research hasn't been robust, and we have struggled to find answers," Tyson said. "We have a lot to learn about basic endometriosis research, diagnostic tools and optimizing treatment."
The uterine lining is crucial for egg implantation, providing a stronghold for a growing fetus. If there is no pregnancy, it sloughs off during menstruation. In the case of endometriosis, the lining escapes out into the abdominal cavity, in a process not well understood.
This misbehaving endometrium often appears on the tissues lining the abdominal cavity and sometimes on an ovary. It can even make organs and tissue (such as the intestines, ovaries and fallopian tubes) stick together, causing, for some patients, life-altering pain and infertility. People with the condition can experience dysmenorrhea or severe period cramps. Other symptoms include painful urination and pelvic pain.
Scientists aren't sure what causes endometriosis, but they suspect it originates in one of several ways. Many think it results from retrograde menstruation, in which the uterine lining travels backward up the fallopian tubes -- which allow eggs to travel from the ovaries to the uterus -- instead of out the vagina.
Tyson has been working as a pediatric adolescent gynecologist for 24 years and has performed thousands of surgeries intended to relieve endometriosis symptoms. She helped shed light on the disease.
How do doctors diagnose endometriosis?
The gold-standard diagnosis is to use minimally invasive laparoscopy. This surgical technique requires a less-than-1-centimeter incision in the skin into which a doctor inserts thin, wirelike instruments into the lower abdomen. During the laparoscopy, the doctor gathers samples of the suspected endometrium, then analyzes it to determine if the cells present outside of or within the walls of the uterus are in fact endometrium.
Scientists are looking for better, noninvasive ways to find disease indicators, including saliva and period blood tests. And ultrasounds and magnetic resonance imaging are going to become increasingly important, because they can now spot early endometriosis.
What are the treatment options?
It's often assumed that something as simple as a combination of a heating pad and ibuprofen can solve the problem. But that's not enough in most cases. Doctors can prescribe hormonal birth control -- the pill, a patch, injections, rings or intrauterine devices -- to reduce pain during periods. Long-term and continuous use are key. There are other medications that stop formation of natural estrogen and progesterone production, but for adolescents, we frequently avoid options that hinder estrogen because it can negatively impact bone growth.
It is recommended to use these medications until a patient wants to become pregnant. At that point, I'll discuss options for pain management as they will need to stop hormonal contraception to conceive.
For patients wanting to better manage their pain with or without hormones, I talk to them about the wheel spokes of a healthy life: sleep, diet, mindfulness, exercise such as yoga and other pain reducers like a transcutaneous electrical nerve stimulation unit, which uses a mild electrical current to tense and release muscles, alleviating pain.
If symptoms don't get better with medical treatments, what else is available?
Endometriosis is a chronic disease. Some of the methods used for diagnosis are also good for long-term treatment. While a patient is undergoing laparoscopy for diagnosis, we can take out problematic tissue that's causing pain or other symptoms. For other cases, we can perform hysterectomies to remove the uterus and fallopian tubes, with or without ovaries, depending on patient age and preference. Of course, hysterectomy is not an option for patients who want to get pregnant.
One of the effects of endometriosis is infertility. How does that happen?
It doesn't always occur. One way that endometriosis impacts fertility is through scarring of the fallopian tubes. Eggs are then not able to pass through the tubes and implant into the uterine wall. Even without tubal scarring we see some decreased fertility in endometriosis due to inflammation. More than 85% of people get pregnant on their own in about a year, but if it seems to be taking longer or patients are older, it is important for patients with endometriosis to seek consultation with a fertility specialist sooner than later.
What would you like to see change regarding the study and perception of endometriosis?
We're planning to follow patients' outcomes after they visit Stanford Medicine. There's a recent model developed in Australia called the National Endometriosis Clinical and Scientific Trials Registry. A registry would help doctors understand the natural history of endometriosis to see how it develops and sustains or wanes in patients.
I'd also like to see more scientifically sound, positive conversation and visibility for endometriosis -- more of an empowered framing of care that focuses on hope and stories of how women manage, thrive with and overcome endometriosis. As with so many situations where there are women struggling to get answers, we see a lot of unfounded fears that are true barriers to helping people. For example, there's a tremendous amount of fear and misinformation about hormonal birth control preventing patients from getting pregnant after they stop using it, and that's just not true. As a doctor who's done this for 24 years, I've partnered with my patients with endometriosis to individualize their care, to find strategies that work for them. Various combinations of the ones I mentioned is usually the secret. More often than not, I see them feel better and go out in the world to do wonderful things.
Image: Helena Nechaeva