Diaphragmatic Endometriosis

Medically Reviewed by Nivin Todd, MD on September 09, 2022
Written by Alyson Powell Key
4 min read

Endometriosis is a painful and sometimes lifelong condition where tissue called endometrium, grows outside of your uterus. The tissue is like the kind that usually lines the inside of your uteru.

It happens in two general areas of your body:

  • Inside of your pelvis (pelvic endometriosis)
  • Outside of your pelvis (extrapelvic endometriosis)

Most people with this condition will have it in their pelvis, but researchers have found that around 12% have it outside the pelvis. One rare type is when the condition spreads to your diaphragm -- the muscle that helps you breathe in and out.

Medical experts aren’t sure of the exact cause of endometriosis. Some reasons include:

  • Backward flow of menstrual blood. With this condition, called retrograde menstruation, blood and endometrial cells flow back through your fallopian tubes and into your pelvis instead of out of your body. These cells, which cause endometriosis, can also reach your diaphragm and stick there.
  • Cell movement. Your blood vessels or lymphatic system may carry endometrial cells to other parts of your body.
  • Cell changes. Hormones or immune issues could change the cells that line the inside of your abdomen (peritoneal cells), or other cells at their earliest stages of development, into endometrial-like cells.
  • Immune system problem. Your immune system may not be able to spot and destroy endometrial-like tissue that grows outside of your uterus.

It’s common not to feel any symptoms with diaphragmatic endometriosis. Researchers think that 70% of people with this condition won’t have any. If you do have symptoms, they can include:

  • Pain when you breathe
  • Feeling sick to your stomach or throwing up (nausea or vomiting)

Pain symptoms may happen around your menstrual period but can crop up at any time. Around 95% of endometriosis lesions develop on the right side of your diaphragm, causing pain on that side of your body. Your level of pain depends on where in your body lesions are located and how deep they are.

Many people live with diaphragmatic endometriosis for a long time without a diagnosis -- often until their mid-to-late 30s. This is later in life than people with more common forms of the condition.

Many doctors may only look for endometriosis in your pelvis. They may miss hidden lesions in your diaphragm. They also sometimes discover endometriosis in your diaphragm by accident, or wrongly diagnose it as a different disease.

Some researchers now suggest that doctors check all people with pelvic endometriosis symptoms for the condition in the diaphragm as well. They estimate that if you have one form of the disease, there’s a 50%-90% chance that you’ll also have the other.

It often takes a thorough doctor to suspect endometriosis of the diaphragm. They’ll use imaging tests to find out more, including:

  • CT scan. This fast and painless test uses special X-ray equipment to look at abnormal areas inside of your chest closely.
  • MRI. This test uses a magnetic field and radio waves to create detailed images of your organs and tissues. An MRI may show more detail than a CT scan.

If you have this type of endometriosis, doctors will usually find lesions on your diaphragm or behind your liver.

There are two main treatments for this condition: medication and surgery.

  • Hormone treatment. If you don’t plan to have children, your doctor will likely suggest medicine to treat your endometriosis. Birth control pills or patches help control hormones that cause endometrial tissue to build up every month. And drugs called GnRH antagonists lower your estrogen and stop your period, which shrinks endometrial tissue. Your doctor could also prescribe pain medication along with hormone therapy.
  • Surgery. An operation to remove lesions is best for people who have ongoing pain even after taking medication. There is a risk of damage to your diaphragm, lungs, heart, or nerves.

While hormone therapy can lower your pain, it isn’t a cure for endometriosis. There’s a chance that your symptoms could come back if you stop treatment.

With a skilled medical team, surgery is safe and works for most people to relieve endometriosis pain. There’s a low chance of problems during or after surgery, or that your symptoms will come back. Some types of surgery offer a shorter hospital stay than others, and you can go back to your regular activity sooner.