Endometriosis is a chronic illness that affects as many as 10% of people who have a uterus. But it often takes years, if not close to a decade, before patients are diagnosed with it. How does that happen? And why is endometriosis misdiagnosed? I’m going to help answer that question in this post. Of course, it’s going to depend a lot on the person and their situation! But I hope that this post will help you understand the reasons why this happens, whether you’re the patient or a loved one of a patient.
I am not a medical professional! I cite my sources and provide resources in this post, but please remember that I do not have a medical degree.
What Is Endometriosis?
This chronic illness affects as many as 10% of women of reproductive age (x). But really, if you have a uterus, you can get endometriosis. It’s a condition where “the tissue that makes up the uterine lining (the lining of the womb) is present on other organs inside your body,” usually the pelvis (x). This tissue typically grows on the ovaries, fallopian tubes, and the tissue lining the pelvis (x).
As the Mayo Clinic explains, “With endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other” (x). Basically, endometriosis can cause your organs and other tissues to be fused together.
How will I know if I have it? The symptoms include abdominal pain, heavy periods, long periods, pain with the heavy and long periods, ovarian cysts, and more. For example, UCLA says that people “with endometriosis often have lower abdominal pain, pain with periods, or pain with sexual intercourse, and may report having a hard time getting pregnant” (x). I personally had the very fun experience of having 2-4 ovarian cysts rupture the week before my period and then again the week after every 2 months until I went on a hormonal birth control injection. That was how my endo announced its arrival; now I also can get flares involving a heavy period with a ton of pelvic pain that last weeks or even months at a time. What can I say? I live on the edge.
Interestingly enough, “The severity of your pain isn’t necessarily a reliable indicator of the extent of the condition. Some women with mild endometriosis have intense pain, while others with advanced endometriosis may have little pain or even no pain at all.” (x). In this case, “mild” refers to the extend of the endometrioma outside of the uterus.
What does endometriosis feel like?
Why Is Endometriosis Misdiagnosed?
The main way to “technically” diagnose it is surgery – The only way to be 110% sure that you have endometriosis is to have a laparoscopic procedure (x). This is a surgery that involves a camera going into your abdomen and then doctors take a tissue sample to test and confirm that it is endometriosis. But not everyone wants to or can have surgery, so it can also be diagnosed through process of elimination, which is how I was diagnosed. That alone can take months if not years.
If you’re wondering why endometriosis can’t be confirmed by imaging, it’s because the location in the body. There’s so much in the abdominal area: stomach, intestines, uterus, ovaries, fallopian tubes, etc. External imaging really can’t see much with all of this. An vaginal ultrasound can only show much.
That being said, here are some other reasons why endometriosis is misdiagnosed or takes a while to get diagnosed:
From a young age, we’re told that painful periods are normal – It’s something that people have been dealing with for thousands of years, something commiserated about. “Ugh, my cramps are so bad today. Do you have some Midol?” And since we can’t physically feel someone else’s pain, we can’t compare our pain to the next person’s to know if ours is out of the ordinary. Often, the sign that someone’s period pain might be worse than someone else’s is that they have to stay home from work or school on a regular basis. But even then, people aren’t sure if their pain is worse enough to warrant talking to their doctor about it. And then, that’s assuming that the doctor(s) will listen.
Additionally, there are studies that show that doctors don’t take women’s pain as seriously as men’s – It’s something that many of us knew from personal experience before the official studies confirmed it. One study says, “In general, women report more severe levels of pain, more frequent incidences of pain, and pain of longer duration than men, but are nonetheless treated for pain less aggressively” (x). This sort of instance isn’t just true for pain: “a 2000 study published in The New England Journal of Medicine found that women are seven times more likely than men to be misdiagnosed and discharged in the middle of having a heart attack” (x). If this happens to women experiencing heart attacks, how will doctors feel about female patients experiencing the abdominal pain that many women experience? And this is just taking into account doctors’ internal biases towards women; trans people will have even different experiences that might make it even more difficult for a trans endometriosis patient.
Chronically ill tips: what to do when a doctor isn’t listening to you
People think that teenage girls are trying to get out of something or just want birth control and that they aren’t actually having a serious problem – This goes off of my previous point: doctors think that teenage girls with period pain just want birth control or are trying to get out of school instead of believing their pain. (This is a big issue for chronic pain patients in general, but that’s a story for another day.) This is a thing that I don’t think is a formal, studied phenomena, but it’s something anyone who was in pain as a child or teenager could tell you. Doctors will push aside a young girl’s pain as nothing to worry about because they think that the teenagers are only trying to get out of school. And they’re not the only ones. In fact, I have an ex-boyfriend who thought that teenage girls who asked for birth control because of period pain were just using that as an excuse. Sure, I’m sure plenty of teenage girls didn’t feel comfortable talking to their parents about wanting birth control. But so many actually want their period pain to be better, whether or not they have endometriosis. And birth control is the way to do that.
What’s your endometriosis diagnosis story?
Like this post? Check out:
How Is Chronic Pain Different from Acute Pain?, Chronic Illness and Mental Health, What Does Endometriosis Feel Like?, Chronically Ill Tips: Preparing for Medical Appointments + Freebies To Help
Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
This is such a great post! I have been diagnosed with endometriosis too and I will be having the laparoscopic procedure in a few weeks. I have been taking hormones too to try to ease the pain and even though they stop my periods from happening, I am still experiencing extremely painful cramps and lower back pain. It is literally the worst. I am hoping after having the procedure done I will get some relief, but my doctor also told me that even after the surgery it come back in as soon as just six months! So it’s definitely no fun and I wish more people understood the extent of pain this causes us and that there were more treatment options as well.
I have just discovered your page and it has made me feel less alone ❤ I have been unofficially diagnosed with Endo (doctors words), I haven’t had the surgery to confirm. I have just recently started taking the mini pill, which I really hope works because the maximum dose of 2 painkillers isn’t working :/ x