me I like to think I'm pretty tough. I played Division I lacrosse in college, ran four marathons (currently training for my fifth), and even competed in an Ironman. So when I felt persistent pelvic pain, I thought my doctor would take me seriously if I told him something was wrong.
But that wasn't true.
Despite my history of gynecological problems (painful periods, a D&C at age 16 to remove a uterine polyp that was causing excessive bleeding, two ruptured cysts in my 20s, etc.), my symptoms were routinely ignored. Several doctors expressed the same opinion. “You are young, healthy and active. Don’t worry, it’s not a serious problem.”
expert in this article
- Dr. Ann Peters, a minimally invasive gynecologist at Mercy Medical Center
- Mallory A. Stuparich, MD, FACOG, minimally invasive gynecologic surgeon in Riverside, California.
- Michael B. Baldonieri, MD, Assistant Professor, Case Western Reserve University School of Medicine
- Somi Javaid, MD, FACOG, board-certified obstetrician and gynecologist, and founder of HerMD
So why did it feel so serious to me? Some days running was unbearable. Some nights I could barely sleep. Most of the time, I felt distracted, drained, and exhausted. I was plagued by a gut feeling that something wasn't right, and equally troubled by a voice in my head telling me to be strong.
I was 36 when my pain was finally given a name: endometriosis. It is a chronic inflammatory disease in which tissue similar to the endometrium grows outside the uterus. It is a condition that can cause inflammation, internal scarring, organ damage and infertility.
Why is it so difficult to diagnose endometriosis?
My story is not uncommon. According to the World Health Organization (WHO), approximately 1 in 10 American women has endometriosis. However, according to a September 2023 research review: Obstetrics and gynecologyIt can take on average up to 11 years to receive a proper endometriosis diagnosis.
Most of these delays are related to the disease itself. “Endometriosis is a difficult disease to diagnose and treat because symptoms vary greatly from patient to patient,” said Michael B. Baldonieri, MD, assistant professor of obstetrics and gynecology at Case Western Reserve University School of Medicine.
Some people have pain only during their menstrual cycle, while others have pain all month long. Some have gastrointestinal problems such as bloating, constipation or diarrhea, while others report pain during sex or exercise, extreme fatigue and even shortness of breath. Some people with endometriosis have no noticeable symptoms at all and are only diagnosed after they have had difficulty conceiving.
Moreover, there is currently a lack of noninvasive diagnostic tests for endometriosis, says Dr. Ann Peters, a minimally invasive gynecologist at Mercy Medical Center in Baltimore, Maryland. It cannot be determined through a blood test or saliva test. It is not detected by Pap smears, and pelvic exams and imaging tests are usually not helpful.
“Ectopic implants are typically too small to be detected on ultrasound or MRI until the patient develops a more advanced, structurally aggressive case,” says Dr. Peters. A final diagnosis is only possible through laparoscopic surgery and tissue biopsy. (And obviously, going under the knife isn't a casual, desirable, or affordable option for everyone.)
“Centuries of institutional and cultural bias against women have certainly played a role in the forced normalization of endometriosis symptoms.” —Michael B. Baldonieri, MD, Obstetrics and Gynecology
Cultural Barriers to Diagnosis
But one of the biggest factors preventing women from receiving appropriate treatment is beyond difficult symptoms or less-than-stellar testing methods. This stems from our collective attitude toward pain, especially reproductive pain in women.
“It is clear that centuries of institutional and cultural bias against women has played a part in this forced normalization. [endometriosis] Symptoms appear,” says Dr. Baldonieri. “I don’t believe that clinicians are intentionally ignoring symptoms, but I do believe that it is easier to say that a condition we don’t fully understand is ‘normal’ and that patients should simply live with the symptoms.”
And let's be clear: There is so much about this condition that doctors don't fully understand. “Even within obstetrics and gynecology residency training programs, there is little formal curriculum to educate health care professionals about endometriosis,” says Mallory A. Stuparich, MD, FACOG, a minimally invasive obstetrician and gynecologist in Riverside, California. “Research into this disease is severely underfunded, so there’s still a lot we don’t know or understand about it,” she said.
Dr. Peters says it's this gap that can conflict even the best endometriosis specialists when deciding how to best care for their patients.
For a 36-year-old patient with debilitating symptoms who had already tried a variety of medications and lifestyle changes, confirming the diagnosis through surgery would be an easy next step. But is that the best option for a 15-year-old? Or would it be better to give teens birth control pills that can successfully manage their endometriosis symptoms and only perform surgery if symptoms cannot persist?
“Because there are no non-invasive diagnostic criteria, we don’t know whether severe endometriosis could have been avoided if we had intervened earlier,” says Dr. Peters. “This is a dilemma I discuss often, especially since I have seen some of the most severe cases of endometriosis.”
“Don’t be afraid to talk to your doctor. I think I have endometriosis. The symptoms I experience are as follows. What should I do next?” —Michael B. Baldonieri, MD, Obstetrics and Gynecology
How to talk to your doctor about endometriosis
If you're struggling with painful periods, don't ignore them. Experts believe that early, tailored treatment can help slow or stop the natural progression of endometriosis and reduce long-term symptoms.
Here are five tips for advocating for yourself and making the most of your visit to your doctor for an endometriosis diagnosis.
1. Track your symptoms
This is very important. Open the Notes app on your phone and start a page called “Symptoms,” or grab a small notebook and put it in your wallet. Write down what you feel every day.
“Ideally, keeping a symptom diary for three to four weeks at the first visit can accelerate the process to help patients feel better,” says Dr. Baldonieri.
There are many gynecological and gastrointestinal problems that have similar symptoms, so the more specific you can be, the better.
“Any information you can provide about the type of symptom, severity, timing, triggering events and mitigating factors will help us diagnose the problem and develop an effective treatment plan. The timing of symptoms around the menstrual cycle is particularly useful,” says Dr. Baldonieri.
2. Ask questions
Office visits may be brief, but it is important to spend time with your doctor to get as much clarity as you need. Don’t understand the words they use? ask. Are you wondering why a new birth control pill is being prescribed instead of the one you were using? ask. A doctor should never be bothered to ask “Why?” Dr. Baldonieri says every time he recommends treatment or testing.
“As a doctor, part of my role is to explain my reasoning and decision-making to my patients,” he said. “When patients are involved in the process, the bond between doctors and patients is better, and in my experience, it improves patient outcomes and satisfaction.”
3. Act decisively
Here's something I wish I had heard sooner. Once again, no one knows their body better than themselves. listen; Trust your symptoms.
“Don’t be afraid to talk to your doctor. I think I have endometriosis. The symptoms I experience are as follows. What should I do next?” Dr. Baldonieri says:
If you feel like your doctor is not taking your symptoms seriously or is ignoring your suspicions, try the following script. “You don't seem to be taking my symptoms seriously. How can we work together to come up with a plan that we'll both be happy with?” A good doctor must respond with new energy and effort. If not, it may be time to find a new doctor.
4. Find an expert
Throughout my twenties, I faithfully tracked my symptoms. But when I tried to talk to my doctor about it, he said: “it's okay. “It’s nothing serious.” I trusted her because she was her respected gynecologist. It took her several years to finally decide to change her doctor. Looking back, I wish I had done this much sooner.
“Concerns about pelvic pain or menstrual cramps should not be ignored or downplayed,” says Dr. Stuparich. “Patients receive the best treatment for their endometriosis when they see an endometriosis specialist who focuses on treating complex endometriosis.”
Start by researching endometriosis surgeons (also known as minimally invasive gynecologic surgeons) in your area. “These doctors have traditionally completed a two-year fellowship beyond traditional obstetrics and gynecology training,” says Dr. Stuparich.
5. Stay flexible
Although endometriosis is not a curable condition, there are a variety of tools available to relieve symptoms, including hormonal medications, painkillers, injections, meditation, dietary changes, pelvic floor physical therapy, talk therapy, and surgery. So if one approach doesn't work, ask your doctor about other options.
“Pain is a very complex process and it can often take many iterations to find the best combination of approaches for an individual patient,” says Dr. Baldonieri. “While current treatments and knowledge cannot provide 100% relief from pelvic pain, rest assured that research and understanding of this condition is progressing and new approaches are being developed every year.”
takeout
Getting a diagnosis of endometriosis can be difficult due to a lack of understanding in the medical community and deep-rooted cultural biases about the menstrual cycle and women's health in general. But there are ways to advocate for yourself when talking to your doctor about endometriosis. This may help speed up the diagnostic process and start treatment for the condition sooner.
And have courage. Although this condition has been ignored for a long time, there is hope. “There is not enough published data on endometriosis because, until very recently, women were not included in clinical research trials,” says Somi Javaid, M.D., HerMD’s chief medical officer and board-certified obstetrician-gynecologist. “But now we have excellent research centers looking at this condition and publishing data that will change the paradigm for both patients and healthcare providers.”
Therefore, we hope that our daughters and granddaughters will not face the same barriers that we face today.
Well+Good articles reference scientific, credible, recent and robust research to support the information we share. You can trust us on your wellness journey.
- Davenport S, Smith D, Green DJ. Barriers to timely diagnosis of endometriosis: a qualitative systematic review. Obstetrician/gynecologist. 2023 Sep 1;142(3):571-583. doi:10.1097/AOG.0000000000005255. Epub July 13, 2023. PMID: 37441792.