Mayo Clinic names six symptoms of endometriosis, and says the seriousness of the pain may not reflect how much tissue is actually there.
Endometriosis has six recognised symptoms. How much it hurts tells you almost nothing about how much tissue is there.
Tissue like the lining of the uterus grows outside it. Every cycle it thickens, breaks down and bleeds, with no way to leave the body. What is left behind is irritation, scar tissue and adhesions.
Below are the six symptoms. Then the reason a pain level misleads. Then what actually confirms it. That last part is where most of the delay lives.
Six symptoms, and the one that usually comes first
Mayo Clinic says the main symptom of endometriosis is pelvic pain, and that it is often linked with menstrual periods.
Plenty of people cramp during a period. Mayo Clinic says those with endometriosis often describe pain far worse than usual. It also says the pain may get worse over time.
- Painful periods. Mayo Clinic says pelvic pain and cramping may start before a period and last for days into it, and may come with lower back and stomach pain. The clinical name for painful periods is dysmenorrhea.
- Pain with sex. Mayo Clinic says pain during or after sex is common with endometriosis.
- Pain with bowel movements or urination. Mayo Clinic says you are most likely to have these symptoms before or during a menstrual period.
- Excessive bleeding. Mayo Clinic names heavy menstrual periods, or bleeding between periods.
- Infertility. Mayo Clinic says that for some people, endometriosis is first found during tests for infertility treatment.
- Fatigue and gut symptoms. Mayo Clinic names fatigue, diarrhea, constipation, bloating and nausea, and says these are more common before or during menstrual periods.
Some people have no symptoms at all. Mayo Clinic says they often find out when they cannot get pregnant, or after surgery for something else.
That is part of why the six matter. For most people they are the only early signal there is.
Why the pain level does not measure the disease
WHO says there is no cure for endometriosis right now. It says treatment aims to control symptoms and limit long term harm.
That makes early recognition the lever. Recognition is exactly where this condition is slippery.
Mayo Clinic states it plainly. The seriousness of your pain may not be a sign of the number or extent of endometriosis growths in your body.
You could have a small amount of tissue with bad pain. You could have a lot of tissue with little or no pain.
So a pain score is not a triage tool here. Neither is toughing it out. The pattern and the timing are what carry the information.
The seriousness of your pain may not be a sign of the number or extent of endometriosis growths in your body.
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⬇ Download your plan (PDF)What confirms it, and what only points at it
Cleveland Clinic says a diagnosis usually starts with your symptoms. Then a medical and family history. Then a pelvic exam, and imaging such as an ultrasound or MRI.
It also says only one test settles it. A laparoscopy, using a small camera to look inside the pelvis and take a tissue sample for the lab.
WHO says a careful menstrual health history helps with diagnosis. That means pain, heaviness of bleeding, and the symptoms that come with them. It is a conversation, not a scan.
WHO also says a clinical diagnosis can be made on symptoms and imaging such as ultrasound or MRI. Surgery is not always necessary.
Cleveland Clinic says the treatment plan depends on four things. How severe the endometriosis is, plans for a future pregnancy, age, and how severe the symptoms are. Over the counter anti inflammatory drugs such as ibuprofen can help. Hormonal therapies, including hormonal birth control, are another option.
Which means the useful thing to carry into an appointment is a record, not a rating.
Three endometriosis beliefs that do not hold
Three ideas add years to a diagnosis that already takes years. Each one has a published answer.
Bad period pain is just normal. Mayo Clinic says people with endometriosis often describe menstrual pain far worse than usual. It says the pain may get worse over time. WHO says the average time to diagnosis is between 4 and 12 years. Treating the pain as normal is a large part of why.
It is probably just IBS. Mayo Clinic says endometriosis may be confused with irritable bowel syndrome. IBS causes bouts of diarrhea, constipation and stomach cramps. It can also happen alongside endometriosis. Mayo Clinic names pelvic inflammatory disease and ovarian cysts as two more look alikes.
If it hurts this much it must be advanced. Mayo Clinic says how bad the pain is may not show the number or extent of growths. A small amount of tissue can hurt badly. A lot of tissue can hurt very little.
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This article is education, not medical advice. Mayo Clinic says to see a member of your health care team if you think you might have symptoms of endometriosis. WHO says there is currently no cure for endometriosis and that treatment aims to control symptoms and limit long term impacts. Ageless Coach is an affiliate partner and may earn a commission on purchases made through links on this page.