It took Shelby Stratton 15 years to get a diagnosis. During that time, she endured excruciating pain that was so bad her husband had to carry her up and down the stairs.
She went from doctor to doctor to stop the agony that flared up around her menstrual cycle, but she also tried bouts of steroids, non-inflammatory diets, physical therapy and sought help from holistic health practitioners. Nothing seemed to work.
When Stratton got pregnant with her first child, the pain stopped. But when her period came back, so did the pain.
“I was in pain probably 14 to 20 days out of the month,” Stratton says. “I kept searching for answers because something was wrong, and I knew there’d eventually be somebody out there to help me.”
As Stratton pushed for answers and refused to give up, she learned how to advocate for herself as a patient—and eventually for a whole community of people living with endometriosis. Now she hopes to help others do the same.
According to the World Health Organization, endometriosis is a disease that causes tissue similar to the lining of the uterus to grow elsewhere in the body. The tissue can create lesions that may cause pain, inflammation, organ dysfunction and infertility. Endometriosis is most often found in the pelvis but has also been found in the bladder, bowels, diaphragm, lungs, kidneys and even the brain.
The tissue may be akin to the lining of the uterus, but having a uterus is not necessarily a prerequisite for the condition. While it’s extremely rare, a handful of men have also been diagnosed with endometriosis, according to a study published in the peer-reviewed journal Case Reports in Obstetrics and Gynecology.
How can that be? Well, the exact cause of endometriosis in women is unknown, so the cause in men isn’t well understood either. However, a study published in the Reproductive Sciences journal says it’s thought to be related to estrogen.
Despite the fact that endometriosis affects at least 10 percent of women today and was first identified 160 years ago, research funding is limited. According to Yale Medicine, it takes an average of 10 years for U.S. women to get an accurate endometriosis diagnosis, most likely because the condition is complicated to diagnose and requires surgery to confirm.
But some doctors also dismiss symptoms and downplay women’s pain, as pointed out in a study published in the Frontiers in Medicine journal, and endometriosis patients are no exception.
Other invisible conditions, such as autoimmune diseases, take an average of 4.5 years to receive an accurate diagnosis, according to AMN Healthcare. So, what can people do to advocate for themselves while they wait for the right treatment?
It’s important for patients to have a voice and feel confident using it, says Tara Bernhardt, director of care coordination for Banner North Colorado Medical Center and the Banner Wyoming Medical Center. Bernhardt and her team typically work with patients who are, in some way, disadvantaged. This includes people experiencing homelessness, immigrants and refugees, Medicaid recipients and the uninsured.
“Most of the time, no one is going to advocate for you [in the doctor’s office],” Bernhardt says. “You have to be your own advocate. You need to feel empowered to take care of yourself.”
Endo Village Team: Inge Rogers, Leigh Flowers, Shelby Stratton, Chelsea Taylor and Alanna Trzcinski.
Take your time and have questions ready
Health care providers are often crunched for time, but Bernhardt says patients shouldn’t let that stop them from asking questions.
“It doesn’t matter if the doctor looks frazzled and busy,” she says. “A lot of people get intimidated, but definitely make them take the time. That time is yours.”
It helps to be equipped with information and bring questions. With a heaping grain of salt, Bernhardt says the internet can be a good place to get a basic understanding of symptoms and help formulate questions about treatment.
“It’s good to give yourself some education, but you need to be careful because you can really scare yourself,” she says.
Bernhardt recommends that patients write questions down and bring the list into the doctor’s office, as it can be helpful to talk to the medical assistant about any concerns before seeing the doctor. However, no question should be off the table with your doctor.
“If they act like it is, that should be a red flag,” Stratton says. “You should be able to have an open dialog conversation. If they don’t know the answer, they should be able to say, ‘Let me do some more research and get back to you,’ or ‘That’s not my area of expertise.’”
Feel empowered to make requests
Bernhardt says it’s OK to ask for tests, especially when seeing your primary care doctor.
“If you’re going in to see your back surgeon, it’s not appropriate to ask for a hormone panel, but with your primary care provider, ask away,” she says.
Below are some common blood tests you can request to establish your baseline level of health and help catch problems early, according to Healthline.
1. Complete blood count. Abnormal levels may indicate nutritional deficiencies, such as vitamin B6 or B12 deficiencies and anemia (iron deficiency), as well as clotting problems, blood cancer, infections and immune system disorders.
2. Basic metabolic panel. This checks for levels of calcium, glucose, sodium, potassium, bicarbonate, chloride, blood urea nitrogen and creatine. Abnormal levels may point to diabetes, electrolyte imbalances or kidney disease. A comprehensive metabolic panel will assess additional proteins related to liver function.
3. Lipid panel. This test measures your “good” and “bad” cholesterol levels. Abnormal levels may indicate a risk for heart disease.
4. Thyroid panel. This tests your thyroid function, which is important for producing and reacting to several hormones that help regulate your heart rate, body temperature, metabolism, mood, energy and more.
5. Nutrient test. This measures levels of vital nutrients such as iron and B vitamins.
Aside from tests, Stratton says it’s also important to ask detailed questions about all treatment options, including their side effects and how they might interact with other medications.
Endo Village members watch “Below the Belt,” a documentary exploring women’s experiences with endometriosis.
Understand your benefits and insurance
As a patient advocate, Bernhardt often works with people who thought something was covered but it wasn’t, leaving them in a lurch.
Bernhardt says understanding your health insurance benefits and what your insurance covers—doctor’s appointments, inpatient and outpatient hospital care, prescription drugs, pregnancy and childbirth services, mental health care and more—is one of the best ways to make sure you and your family’s needs are met without unfortunate surprises.
If you have insurance through your workplace, Bernhardt recommends taking the time to sit down with a benefits navigator or your company’s human resources office.
Shop around
Many women Stratton has talked to feel like they’re stuck with their doctor, especially the one who delivered their children. But you can always get a second opinion.
Bernhardt recommends reading up on providers and not being afraid to pick a different one if things don’t feel right. If you don’t feel like your doctor listens to you or has enough experience with your particular concern, she says it’s OK to keep looking.
“Whether you’re dealing with cancer or a hip replacement, you should feel really comfortable,” she says.
Don’t give up
At times, Stratton was discouraged. Doctors initially ruled out endometriosis because she got pregnant quickly with her first child and eventually got pregnant with her second.
She was passed around to different providers for years without answers until she connected with a pelvic floor physical therapist who’d worked with many women living with endometriosis. She referred Stratton to a specialist who was nearly certain she had the condition.
“We left that appointment and I just started to cry,” Stratton says. “Finally, somebody listened to me. She sat with me and gave me all the treatment options.”
The only way to confirm an endometriosis diagnosis is through laparoscopic surgery, a procedure that allows doctors to remove the lesions caused by the condition.
Stratton had surgery in 2022, as well as a partial hysterectomy. While she still has some health issues to work through, things are looking up.
“I’m not fully healed, but I’m on this healing path,” she says. “I haven’t had any pain like I did with my endometriosis beforehand.”
Now, on top of her day job as a women’s health and fitness specialist through her business Live Fierce Wellness, Stratton serves as a fundraising coordinator for Endo Village, an endometriosis support group that meets monthly in Northern Colorado.
She helped start the group, which meets on the third Sunday of every month. Women come from Longmont, Greeley, Windsor, Loveland, Fort Collins and other areas to find support and understanding.
As endometriosis gets more attention, Stratton hopes the public will gain a better understanding of it. Endometriosis has a hereditary element, Stratton says, and that motivates her to advocate for others who may have an increased risk of developing the disease.
“I’m doing my damnedest to help the next generation out,” she says.
