For many women, getting a diagnosis of endometriosis is a long and frustrating haul. “From the time of your first discussion with a doctor about painful periods or painful sex, it often takes 7 to 10 years to get a diagnosis,” says Megan Wasson, D.O., chair of medical and surgical gynecology at Mayo Clinic in Arizona. “You may have been seen by three or four doctors before you have answers.”
And then when you finally learn what's going on with your body, some of the things you hear and read in forums and on social media (hint: stick to reliable sites and don't dwell on horror stories!) can feel terrifying.
Just in case you've started down a rabbit hole and you can no longer see the light of day, we're here to tell you that while endometriosis is a tricky chronic condition, there are effective ways to manage it. “A diagnosis of endometriosis is not a life sentence,” says Dr. Wasson. “There are treatments that can greatly improve your quality of life.”
What is endometriosis?
The condition, in which tissue similar to that of the lining of the uterus grows outside the uterus, often includes a range of symptoms. “Endometriosis doesn’t look the same in everybody,” says Sara Morelli, M.D., Ph.D., associate professor, Director, Division of Reproductive Endocrinology and Infertility, Rutgers-New Jersey Medical School. “Sometimes the symptoms overlap with other pain-related syndromes, such as GI trouble.” That's partly why it is hard to diagnose. It's also very common, with about 11% of women affected.
Endometriosis symptoms
Typically, people with endometriosis experience symptoms such as period pain, spotting between periods, back pain and pelvic pain, pain during and after sex, digestive problems such as bloating and nausea, and painful bowel movements or pain when urinating during periods.
Sometimes symptoms are vague. “Endometriosis can wreak havoc and cause an inflammatory process throughout the body,” says Dr. Wasson. “You may experience fatigue and muscle soreness. Often, patients can’t say why they’re not feeling good, just that they’re feeling crummy.”
Endometriosis facts
Endometriosis is not fatal.
The condition itself does not shorten your life. "Endometriosis is largely a quality of life issue that centers on symptoms related to pain," says Dr. Wasson. "Therefore, treatment should be centered on improving and optimizing quality of life."
You’re not alone.
In recent years, there’s been a vocal grassroots movement by people who have learned to deal with the symptoms and push for better treatments. Support organizations such as Nancy’s Nook Endometriosis Education and Endo Warriors help educate people about the condition and potential treatments. Sites such as I Care Better offer a searchable database of endo specialists who have been peer-vetted.
These resources can help patients educate themselves about their options. “The endo community is starting to advocate much more aggressively,” says Dr. Wasson. “Most patients I see have been self-referred and come seeking me out because they’ve done the research and are willing to speak up for themselves.”
In fact, advocating for yourself is important. “If you see a doctor and say you’ve read about endo and the current treatments, and you’re not being listened to, find another doctor,” says Dr. Morelli. “It’s always okay to get another opinion.”
You can get relief.
Medication isn’t a cure for endometriosis, but it may help stabilize symptoms and make them more manageable. “Not every single patient has to have surgery. Endometriosis definitely can be medically managed in some patients,” says Dr. Morelli. “Depending on your symptoms and priorities, we may prescribe hormonal medications, such as birth control pills or progesterone, to modify the endometriosis lesions.”
But if symptoms persist, you may benefit from surgery. Ablation, which removes superficial lesions by burning them with a laser or electrosurgery, is performed by many gynecologists. Some experts, however, are turning away from this procedure, because the lesions often grow back or new ones develop. “Ablation is like cutting the weeds on your lawn without removing the roots because they just grow back,” says Dr. Wasson.
The standard of care in recent years is laparoscopic excision surgery, which is performed by gynecologic surgeons, especially those trained in MIGS, or minimally-invasive gynecologic surgery. “Excision removes the cells from the body. We want to remove all the disease to give better long-term success for the patient,” says Dr. Wasson.
Although this procedure is not right for every person, excision also is favored for deep infiltrating lesions or the removal of ovarian cysts that are endometrial in origin in order to minimize recurrence, says Dr. Morelli.
For this procedure, you should seek the care of a surgical specialist trained in MIGS. “Patients often stay with the same ob/gyn they’ve always had. But your family medicine doctor wouldn’t fix your hernia,” says Dr. Wasson. “If you need surgical intervention for endometriosis, you need to see a subspecialist.”
Endometriosis doesn’t mean you can't get pregnant.
Many people fear endometriosis will prevent them from having a baby. “It’s true that about half the patients seeking treatment for getting pregnant have endometriosis,” says Dr. Wasson. “But about 70% of people with endometriosis will get pregnant without an issue at all.”
If you need some help from a reproductive medicine doctor, your odds are still pretty good, depending on your age and how advanced your diagnosis is, according to Brigham and Women's Hospital. Talk to your doctor about your options if getting pregnant is one of your goals.
In someone with an endo diagnosis, whether you will require fertility assistance depends on the nature of the disease. “You may conceive on your own, or you may need in vitro fertilization, or you may benefit from surgery to remove the tissue,” says Dr. Morelli. “But being diagnosed with endometriosis does not mean you cannot get pregnant.”
Research to find better treatments is ongoing.
Funding for endometriosis research doubled in 2021. This is amazing, since the condition is a problem for so many women and girls. Scientists are exploring non-invasive detection techniques, such as biomarkers in the blood, and non-hormonal treatment options, such as medications that target blood vessel development because these lesions require blood vessels to develop, says Dr. Morelli. Although none of these options are yet available, research is chugging along.
Bottom line: The most important takeaway is that, while we don’t have a way to cure endometriosis yet, you do not have to suffer. With medications, surgery, and by finding a doctor who listens to your concerns, you can immeasurably improve your quality of life, says Dr. Wasson.
