In the United States, March is annually recognized as Endometriosis Awareness Month. Endometriosis affects one in ten women and is often very difficult to diagnose. Given the profound impact that endometriosis can have on a woman’s fertility, that this is a disease which, we’ve spoken to two incredibly esteemed reproductive endocrinologists and fierce infertility advocates, Dr. Lora Shahine and Dr. Serena Chen, to cover the basics and help raise awareness around this disease.
What is endometriosis, exactly, and what causes it?
Dr. Shahine: Endometriosis is a common health condition in which endometrial tissue, which normally lines the uterus, develops outside of the uterine cavity in abnormal locations such as the ovaries, fallopian tubes, and abdominal cavity. Unfortunately, no one knows exactly what causes endometriosis. Theories include retrograde menstrual flow (endometrial tissue flowing backward through the fallopian tubes and implanting in the pelvis), genetic factors, immune issues, and possibly hormone imbalances.
How early can a woman detect that she has endometriosis?
Dr. Shahine: Endometriosis can be detected early in life but not usually until after menstrual cycles begin.
Is endo common in adolescents or do symptoms only present itself later?
Dr. Shahine: There is no definitive way to know how many women have endometriosis and therefore no way to know how often it starts for young women. Some women who have endometriosis have no symptoms, some women with painful periods and pain with intercourse (common warning signs) can be dismissed by family, friends, and medical providers as having ‘cramps’ and hearing from others ‘aren’t all periods painful?’
Why is it so difficult to diagnose?
Dr. Shahine: The only way to definitively diagnose endometriosis is with a laparoscopic surgical procedure in which the trained surgeon can recognize the implants and often obtain samples for testing in the pathology lab. Other signs that suggest endometriosis can be scarring felt by a doctor during a pelvic exam or collections of endometriosis seen on ovaries with a pelvic ultrasound (the structures are called endometriomas).
Approximately, how many women are diagnosed with it and do you have an idea of how many people may have it but have not been properly diagnosed?
Dr. Shahine: Researchers believe that at least 11% of reproductive age women have endometriosis – this is 6.5 million women in the United States.
What happens if you don’t get an early diagnosis?
Dr. Chen: As Dr. Shahine explained, cells from the lining of the uterus, known as the endometrium, instead of growing in the uterus, where they are supposed to – they grow outside of the uterus, most commonly in the pelvis. These implants can cause inflammation, scarring and pain. This is why the sooner we can catch it and address it, we can ideally prevent any additional damage this scarring can create.
Additionally, Endometriosis is generally considered a benign disease. However, several studies suggest that endometriosis may indicate a potential slightly increased risk for ovarian cancer, which can be reduced by pregnancy and or suppression of ovulation with birth control pills. This is another reason to try and see a doctor sooner rather than later to be on the safe side.
What should an endometriosis patient look for in her medical care and/or doctor?
Dr. Chen: Being proactive and educating yourself as much as possible about endometriosis and tracking your symptoms is the first step. That way, when you meet with an OB/GYN or fertility specialist, you can best communicate what you’ve been experiencing. You also want a doctor who can walk you through all of your options, whether it’s a medical approach, a surgical approach or IVF (if you’re trying to conceive) or even more holistic approaches. In general, you want someone you feel comfortable with, who works on your treatment plan collaboratively.
What is your clinical approach to treating endometriosis?
Dr. Chen: Depending on the severity, I may start with suggesting the use of Nonsteroidal anti-inflammatory drugs (NSAIDs), such as Advil, Tylenol or Aleve for painful menses. They are often the first-line treatment for painful endometriosis, followed by hormone therapy. This may include oral contraceptive pills, progesterone-only pills, a new oral medication called elagolix, or an injection called Lupron. As Dr. Shahine mentioned earlier, laparoscopy is often used to confirm the diagnosis but it can also be used to remove some mild to moderate endometriosis. This can be completed before additional treatments are recommended. For patients who want to conceive, I tend to try to help them conceive first, and I tend to consider surgery as a last option. I always worry about the impact of surgery on the ovarian reserve. Surgery and all treatments must be considered carefully – weighing the risks and the benefits and these can differ for each individual patient. I think the most important factor for patients is that they have to feel comfortable with their physician and the plan. A lack of comfort is a sign that you need to talk with your physician more before you decide on a plan or sometimes you may need a second opinion.
Since endometriosis is a chronic inflammatory condition, I ask all my patients to work very hard on general health. There is some evidence that a healthy diet, sleep, and regular exercise may decrease the severity of symptoms in endometriosis, and we should all be doing these things anyway! In addition, I have had many patients with significant pain who respond to acupuncture. It is not for everyone and you must discuss with your doctor, but it can be a useful adjunct to chronic endometriosis pain management.
When is IVF recommended when you have endo?
Dr. Chen: If you’re actively trying to conceive and endometriosis has caused any blockages in the fallopian tubes or we suspect it may have impacted your implantation (preventing an embryo from successfully attaching itself into the uterine lining), this is when IVF would be suggested. There have been studies that show if you have this condition, you may have a lower “implantation rate” so IVF and a test like endometrial receptivity could potentially address that. It’s worth noting though that not everyone with endo will have difficulty conceiving. There is a fragment of the endometriosis population that may need IVF to build their families. In some cases, it may even be recommended to perform a laparoscopy and then, at a specific time afterward, do an IVF cycle. A study by The Journal of Minimally Invasive Gynecology showed this specific protocol may increase your chances of conceiving.
How can patients best advocate for their care?
Dr. Shahine: Patients must be persistent with their questions and find medical providers that listen to their concerns with compassion.
Dr. Chen: I completely agree with Dr. Shahine. There’s also typically a genetic component with endometriosis. This means that if someone in your family has it, chances are you may as well. You should speak to your gynecologist about your concerns. However, if you’re interested in trying to conceive, you should speak to a reproductive endocrinologist or infertility specialist so they could best advise you on how to proceed.
After speaking with both of these inspiring and sincerely dedicated doctors, the overall message is to know the symptoms, listen to what your body is trying to tell you, and don’t hesitate to be proactive about this condition.