PORTLAND, Maine — One in 10 people with a uterus suffers from endometriosis, an incurable inflammatory disease caused by the reproductive system.
March is Endometriosis Awareness Month and a chance to educate people about the underdiagnosed and under-researched disease. That's why NEWS CENTER Maine sat down with some medical professionals to learn how to get a diagnosis and what treatments are available.
What is endometriosis?
The Federal Drug Administration (FDA) says it is one of the most common gynecological diseases, impacting almost 11% of American women between the ages of 15 and 44. The most common symptoms include pain and infertility.
Endometriosis forms when cells similar to the lining of the uterus grow outside the uterus, which can then form lesions throughout the abdominal cavity.
"Endometriosis can develop in any girl or woman who has menstrual periods but is especially common among women in their 30s and 40s and may make it harder to get pregnant," according to the FDA website.
NEWS CENTER Maine sat down with Intermed's Chief of Obstetrics and Gynecology Dr. Elisabeth Deeran, who said it can take anywhere from six to 12 years to get a diagnosis for endometriosis because people often normalize their symptoms. She said common symptoms of endometriosis are chronic pelvic pain, infertility, pain during intercourse, painful bowel movements, and pain while emptying the bladder.
"When I have a patient in my office who says they miss work because of their period. ... They are on the ground with nausea and vomiting with their period and they kind of thought that was normal—[for] a clinician, their ears should perk up. That isn’t normal," Deeran said.
Deeran said sometimes it takes multiple doctor visits and sometimes several providers before someone gets a proper diagnosis or treatment plan, which is why it is key to know how to identify endometriosis symptoms.
"Sometimes a pelvic exam is helpful or an abdominal exam. ... Sometimes imaging can actually tell us that a person may be affected by endometriosis," Deeran said. "For a definitive 100% diagnosis we need to do surgery. That does not mean, though, that everyone who has endometriosis has to have surgery."
What are the treatments?
Treatments available for endometriosis vary depending on how old a person is and the severity of their symptoms. The key to regulating endometriosis is regulating the hormones in the body.
Deeran said they often start by prescribing birth control pills and anti-inflammatory medications like ibuprofen. If for some reason a patient has side effects from those medications, doctors will recommend an intrauterine device (IUD) or arm implant, which are both alternative forms of birth control.
Suppose those treatments fail or aren’t enough. In that case, doctors now can prescribe one of two medications on the market called Orilissa, or Myfembree, which puts the body into a type of menopause, to suppress the endometriosis tissue from growing.
Deeran said these new medications can really help some people suffering from endometriosis, but they can only be taken for short periods of time. She said current research shows these medications can slightly decrease your bone mass density, making you vulnerable to osteopenia or osteoporosis.
Whether you take the medication for six months or two years, your bone density will shoot back up to normal once you stop taking the medication, Deeran reassured. This is another area where more research would come in handy, she said.
How can surgery potentially help endometriosis?
Endometriosis surgeries are done laparoscopically, but like any surgery, they are invasive and have risks, Deeran said.
She said the goal is to remove as many of the endometriosis implants as possible. Deeran said some implants can’t be removed if they sit on fragile parts of the anatomy and some implants might be so small that your surgeon can’t see them with the naked eye.
Another surgery available to endometriosis sufferers who are certain they do not want children/more children is a hysterectomy—removal of the uterus—which can be a successful option for stopping endometriosis.
Deeran said around 60% of patients who have a hysterectomy will have resolution of their symptoms, but there is about a 30% reoperation rate, where patients come back to have their ovaries removed as well.
The ovaries are in charge of releasing estrogen into the body among other hormones, Deeran explained. By removing the ovaries, it can stop endometriosis, which is an estrogen-dependent disease. However, there are risks to taking out someone’s ovaries before menopause, Deeran added.
Removing the ovaries can increase the risk for osteopenia or osteoporosis and create issues with cardiovascular, cognitive, mental, and reproductive health, Deeran said.
For those looking to avoid surgery, Deeran said there are some natural remedies for pain management. She said altering your diet, exercising regularly, getting acupuncture, and going to therapy (to manage your emotional health), can be great complimentary treatment options.
Diet, acupuncture, and endometriosis
NEWS CENTER Maine met with nationally-certified acupuncturist and herbalist Angela Bell with Six Branches Family Acupuncture in Portland, to expand on the holistic approach to treating endometriosis symptoms.
Bell said incorporating a low-inflammatory diet into your life is the best way to manage symptoms associated with the disease. She said patients can experience some relief by eliminating caffeine, alcohol, sugar, and processed foods, along with common allergens like gluten and dairy.
"In my clinical experience, changing the diet can make a big difference in how people with endometriosis feel on a day-to-day basis. When following a low-inflammation diet one can expect decreased pain levels, improved energy, and decreased digestive issues," Bell said.
Bell added that the medical community is still unclear on what exactly causes endometriosis, but said Western medicine is finding more and more that it is an inflammatory disease of immune dysfunction.
According to Bell, that is why it is so important to do what you can to reduce inflammation in the body. Not only can reducing inflammation help with chronic pelvic pain often associated with endometriosis, but other symptoms linked to the disease such as lower back pain, irritable bowls, fatigue, acne, pain with urination and/or bowel movements, pain with sex, pain with pelvic exams, mid-cycle pain, sciatica, and even right shoulder pain and lung collapse.
"The reason acupuncture is such a powerful treatment for endometriosis is that it promotes circulation, reduces inflammation, and enhances immune function by encouraging the optimal distribution of resources—blood, hormones—throughout the body," Bell said.
Mental health and endometriosis
According to Deeran, having a therapist to talk to can be helpful for anyone struggling with an endometriosis diagnosis.
The chronic pain someone experiences with endometriosis doesn't just affect them physically, but it can affect them mentally as well.
"We do see that there are other impacts on energy levels and mental health. It can be quite isolating to feel like no one is listening to you and to feel like there is not the best set of options for [pain] management," Deeran said.
So, if you suspect you have endometriosis, make an appointment with a health care professional to get a proper diagnosis. Not only are there treatment options available, but there are physicians out there ready to listen.
"If we can get more people to know they have endo and have their doctors reporting that illness, hopefully we can get more research and we can better define a disease that is still poorly understood," Deeran said.
To learn more about endometriosis, click here.