Why don’t doctors believe my endometriosis pain?

No, the pain you feel is not normal. Then why is your gynecologist dismissing it as if it is? If this sounds familiar, you’re not alone. It’s estimated that about 10-20 percent of women have endometriosis.

Endometriosis is very common in women, yet there isn’t much research on the disease. In turn, there’s usually a delay in women getting accurately diagnosed. Their discomfort gets brushed off and they’re led to believe they’re just one of the unlucky ones with bad periods. For some women, it’s taken up to 12 years to get an endometriosis diagnosis.

This post will discuss the signs and symptoms of the disease and provide tips on how to talk to your doctor if you believe your pain could be endometriosis.

What is endometriosis?

Endometriosis is named after endometrium, the tissue that lines the inside of the uterus and is naturally shed each month during menstruation. In endometriosis, tissue that has the same composition as endometrium is found outside the uterus, usually in the abdominal cavity.

Because this outside tissue acts the same as the tissue inside the uterus, it tries to shed each month but has nowhere to go. This tissue in turn becomes trapped in the body and creates painful growths.

Symptoms of endometriosis include:

  • Excessive period cramps
  • Pain during sex
  • Painful bowel movements and/or urination
  • Excessive bleeding
  • Infertility
  • Fatigue
  • Diarrhea or constipation
  • Bloating
  • Nausea

While many of these symptoms normally occur for women around the time of menstruation, women with endometriosis report pain and discomfort that’s far worse than what’s normal.

While endometriosis currently has no cure, there are various treatments and therapies that can subdue the pain. Treatments can range from pain medication and hormonal contraceptives to more intensive therapies and surgical options.

Why won’t my doctor diagnose me with endometriosis?

According to the Endometriosis Associations research registry, more than half of endometriosis patients were told by their doctors that nothing was wrong with them. Why is that?

There are a few reasons why women with endometriosis have a hard time getting a diagnosis.

They believe it’s linked to other pelvic-related issues

Many doctors mistake endometriosis for other conditions that cause similar pelvic pain, such as pelvic inflammatory disease (PID) or ovarian cysts. Endometriosis can also be mistaken for irritable bowel syndrome (IBS) because both conditions’ symptoms include bloating, diarrhea, constipation, and cramps. IBS can also accompany endometriosis, which can complicate the diagnosis.

However, data suggests that jumping to these other conclusions too quick could lead to a misdiagnosis. According to a University of Michigan Health article, endometriosis is thought to explain 50 to 80 percent of cases of chronic pelvic pain in women.

Stigma & lack of women’s health research

In a New York Times Article, Austin Clayton, director of the US Office of Research on Women’s Health, said, “We literally know less about every aspect of female biology compared to male biology.”

And this is true. Not much research has been done to explore women’s health issues vs men’s health issues. Because of this, there aren’t many effective treatments or initial testing options (the only surefire way to diagnose endometriosis is with a surgical procedure called a laparoscope).

This lack of research stems from historical discrimination against women in research. In fact, Women weren’t included in clinical trials until the 1990s. Even though women make up 70% of chronic pain patients, 80% of pain medication has been tested on men only.

Historically, because no one understood the pain women were feeling or where it came from, there began a “hysteria” discourse that would describe “difficult” women who claimed their treatments weren’t working or suggested that their disease was something else. This forced women to believe it was all in their heads, and thus, created a narrative that reproductive pain is just part of being a woman.

Of course, no one today is suggesting that endometriosis isn’t a real disease. But it’s important to understand the historical stigma behind women’s health issues and why there are so few options and such little understanding of what women are really going through.

Tips for talking to your doctor

While it’s important for you to effectively communicate with your doctor, your doctor must also know how to effectively listen and troubleshoot with you. Here are a few things for you to keep in mind when you go to your gynecology appointment:

  • 01 Write down your questions beforehand. This way you’ll make sure not to forget any important questions you had, and you’ll already have a pen and paper ready to write down any information your doctor gives you.
  • 02 Be straightforward and specific when explaining your symptoms. Trust what you’ve been feeling. Don’t minimize your pain. Share specific instances when your symptoms have felt the worst. The more specific you can be, the more information your doctor has to better understand what you’re feeling. Because simply “having cramps sometimes” and feeling a constant sharp, knife-like pain in your pelvis tell the doctor two very different things.
  • 03 If you doctor doesn’t listen. Find a new one. Dismissing your pain or giving you a treatment without much testing isn’t an appropriate way to deal with a patient’s issues. Too many women endure years of misdiagnosis, but if you find the right doctor who will listen to you then you could find pain relief much, much sooner.

While endometriosis is in desperate need of more research, the right doctor can help you find treatments to ease your pain and help you better understand what’s going on in your body. Just be persistent. You know what you feel, and you shouldn’t have to endure years of pain due to dismissal from your doctor and misdiagnoses.

Clinical Trials for Endometriosis

If you’ve been diagnosed with endometriosis, sign up to be alerted when a clinical trial is enrolling in your area that might be a good fit for you. We will alert you when we think we have found a clinical trial that may be of interest to you.