Updated guidance may accelerate endometriosis care

The American College of Obstetricians & Gynecologists published updated clinical guidance on endometriosis in February. The condition, which originates in the pelvis, is a chronic inflammatory disorder that can cause pain and infertility. It occurs when the lining of the womb migrates outside that organ. The update includes diagnosing endometriosis based on clinical findings and imaging tests, and initiating treatment more quickly, when appropriate. 

Dr. Sarah Prager, professor of obstetrics and gynecology at UW Medicine, discusses the guidance in a Q&A. It has been edited for length and clarity. 

Q: What is endometriosis? 

A: Endometriosis is an inflammatory disease where cells from the endometrium — the lining of the uterus — end up outside of the space where they're supposed to be. When those cells migrate past the lining of the uterus, either into the muscle of the uterus or into other organs in the body, they can cause pain, bleeding and scarring. 

Q: What are the symptoms of endometriosis? 

A: People with endometriosis generally have cyclic pelvic pain around the time of their periods. Endometriotic cells are sloughed off by the uterus during a period (menstruation). If those cells go to other places in the body, they can still bleed around the time of the period. Blood that is in the tissue or in the pelvic cavity or abdominal cavity is very painful. Periods and cramps can be worse for some people with that condition.  

If there is bleeding in the fallopian tubes, it can also lead to scarring because the tubes are not supposed to have endometriotic cells there. That scarring can make it more challenging to get pregnant and increases the risk for ectopic pregnancies. 

Q: When do you recommend seeing a doctor about symptoms? 

A: Anyone who is experiencing very heavy or painful periods should reach out to their primary-care clinician or gynecologist to have that evaluated. Even if it's not endometriosis, having significant pain is not sustainable, and that needs to be evaluated and managed. 

Q: What are the treatments for endometriosis? 

A: Hormonal contraception is the first line of therapy for most people. Using hormones to suppress the ovary and endometrium is the best way to prevent endometriosis from being symptomatic. There are some types of hormonal contraception that are strong enough that they can cause some endometriosis to regress. Sometimes people have almost complete resolution of their symptoms if they're on a contraceptive method that works well for them. 

Another class of medications called GnRH agonists act on the ovary to shut down the production of estrogen, which stimulates endometriosis cells both in the uterus and outside of the uterus. If you can shut down the ovary so that estrogen is not being produced, that can symptomatically help. 

Q: Why are there delays in diagnosing endometriosis? How can those be reduced? 

A: The definitive way to diagnose endometriosis is by doing laparoscopic surgery, where we put a camera into the belly. Because of that barrier, I think diagnoses have been delayed for a lot of people. We now have better ultrasound modalities for diagnosing endometriosis, and that is an easy test for patients to get. And so that can actually significantly move up the time period in which we check for endometriosis. 

The new recommendations are to initiate treatment if somebody has symptoms that are consistent with endometriosis. 

Q: What are some benefits and limitations of starting a patient on therapy for endometriosis without a diagnostic based on laparoscopic surgery? 

A: A clear benefit is avoiding surgery. Even safe, low-risk surgeries have risk, so if we can avoid surgery and still manage someone's disease, that's better. The downside of not confirming the diagnosis with laparoscopic surgery is that there's always a risk that it could be something else that we're misdiagnosing. For some patients, it's a big relief to know 100% what it is that we're managing. For other patients, they would prefer to skip surgery if they don't have to have one. 

Q: What role do non-specialist clinicians play in improving early recognition of endometriosis under these new recommendations? 

A: Primary-care physicians are going to play an enormous role. If someone is complaining of cyclic pelvic pain, then getting an ultrasound is a great first step. That's a relatively low bar for a lot of people because even if the vaginal ultrasound isn't an option for that person, an abdominal ultrasound can offer some information. That means a lot of the diagnosis can stay within the hands of primary-care providers. 

For patients who don't want an ultrasound, the same medications used for birth control are generally very safe for most people. Starting a birth control medication regimen to address the symptoms of endometriosis is perfectly reasonable and recommended based on these new guidelines, as well. 

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