A figure is seated with arms and legs outstretched. An island is located at the pelvic region with dotted travel lines pointing to different areas of the body where a helicopter, a sailboat, a plane, and a cruise ship are heading to.

Study Shows Extra-Pelvic Endometriosis Probably Not Rare

I had endometriosis removed from my ovaries and uterus more than a decade ago. But I'm pretty sure I have endometriosis dotted throughout my body. But I can't tell you for sure. That's because, so far, I can't find a doctor willing to look on my other organs for it. And that's after practically begging my most recent OB-GYN.

Here's how the all-too-common conversation went down:

I described upper and lower abdominal pain and asked if endo lesions could be to blame. She said what most doctors say: that kind of thing is rare and highly unlikely. I cited research and told her plenty of studies have found endo on the diaphragm. And there's evidence it could be the cause of my sciatic pain, too. Again, she dismissed the idea. I asked if we could look for it anyway. That's when she told me surgeries are a big deal and MRIs are expensive. Then she pushed hormone suppressants and birth control — again.  When I refused, she told me "patients are difficult to treat when they won't try the options given to them".

But I have tried hormonal options, I told her. They weren't helpful. And I know that Lupron and Orilissa are only temporary fixes. Things got really tense after that. We were locked in some kind of patient-doctor standoff.

Ultimately,  I left with no help for my pain. But, at least I managed not to cry in her office. I waited until I got to my car to do that.

(Pause for exhausted chronic illness sigh...)

I've asked many doctors and physical therapists about my extra-pelvic pain. And they all say the same thing: it's really rare to get endometriosis there — and by there, they mean anywhere but the uterus. But new research says it's probably not that unusual; it's just not diagnosed. And I believe it. Because how can doctors rule out extra-pelvic endo if they won't even look for it?

Endometriosis can affect every organ

Researchers at the University of Sao Paulo and the Cleveland Clinic combed through 5,465 articles. They found 179 to include in their systematic review.1 The goal: find case studies of all the locations of deep-infiltrating endometriosis. Some doctors call it through-and-through endo. It means it's not just on the surface of your tissue.

The paper — published in the Journal of Minimally Invasive Gynecology — states: "Primary extrapelvic endometriosis can affect nearly every organ system of the female body. This systematic review revealed that extrapelvic and distant disease, historically considered to be rare, has been reported by a considerable number of studies such that the incidence may not be that rare after all".

Here's what they found:

  • 230 abdominal parietal endo (PE): That includes the abdominal wall, groin, or perineum.
  • 43 abdominal visceral endo (VE): That includes the kidneys, liver, pancreas, and bile ducts of the gallbladder.
  • 628 thoracic: That's your diaphragm, lungs, and pleura (that's tissue that lines your chest and lung).
  • 6 central nervous system: That includes the brain and spinal cord.
  • 12 muscle or nerve: That could be your arm, leg, or even your sciatic nerve.
  • 1 nasal: That's right. They found endo in the nose.

What were common symptoms?

Besides painful periods, people with extra-pelvic endo experienced these the most:

  • Abdominal PE: A mass they could feel, cyclical or non-cyclical pain, bleeding from their belly button.
  • Abdominal VE: Depending on which organ was affected: pain in their upper abdomen, shoulder, side, stomach, or area below the ribs.
  • Thoracic: Chest or shoulder pain, bloody cough, collapsed lung.
  • Central nervoussystem: Brain endo: cyclical headaches, seizures, one-sided numbness. Spinal endo: numbness, lower back pain, urinary and bowel problems.
  • Muscle and nerves: Swelling, cyclical muscle pain. Sciatic nerve: butt pain that radiates to the top right foot.
  • Nose: Cyclical nose bleeds, nasal pain.

How were these patients treated?

Most of the patients found relief with excision surgery. Some, like the patient with brain endo, were treated with hormone suppression. Most were treated by a general surgeon. That means a non-gynecological physician helped them.

Researchers couldn't recommend the best way to get diagnosed or treated because of the "low prevalence and the limited quality of studies available in the literature". That means not enough doctors are doing these kinds of procedures and writing about them.

But they did show that MRIs were the most successful at finding deep-infiltrating endo. So, if you think you have endo somewhere other than your uterus, ask your doctor for more than just an ultrasound. I know I will be.

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