Signs and Symptoms of Endometriosis

Endometriosis is a chronic condition in which tissue similar to the endometrium or inside lining of the uterus (womb) grows outside of the uterus on organs such as ovaries, fallopian tubes, bowel, outside uterine walls, kidneys, bladder, or even lungs.

The endometrial lesions are thought to be caused by overproduction of prostaglandins and estrogen, which leads to chronic inflammation, according to the American College of Obstetricians and Gynecologists (ACOG). (1) The most common symptom of endometriosis is pelvic pain, but some women experience no symptoms at all.

Although endometriosis can occur in any woman after her first menstrual period (it has been found in those as young as 11), the condition is most common in women in their reproductive years, ages 25 to 35, according to the Endometriosis Foundation of America. (2)

What Are the Signs and Symptoms of Endometriosis?

It’s important to know that with endometriosis, symptoms are chronic — this is a key aspect of getting a diagnosis. You might experience:

• Painful menstrual periods with pain that may range from mild to debilitating and may get worse over time (1). Although pain may feel worse during menstruation, pain can occur at any point during your monthly cycle, according to Johns Hopkins Medicine (3)
  
• Heavy menstrual periods
• Spotting or bleeding between menstrual periods
• Pain during or after sex
• Pain in the pelvis or lower abdomen (ACOG estimates that endometriosis is present in 87 percent of women suffering from chronic pelvic pain) (1)
  
• Infertility (experienced by approximately 30 to 50 percent of women with endometriosis, per the American Society for Reproductive Medicine) (4)
• Painful bowel movements or urination, especially during menstrual periods
• Fatigue, diarrhea, constipation, nausea, or bloating, especially during menstruation
• Neuropathy because of swelling and scar tissue

What Does Endometriosis Pain Feel Like?

Pain associated with endometriosis can vary widely from patient to patient. Some women experience no symptoms; some experience severe pelvic pain or pressure. The first sign or symptom for others is having difficulty getting pregnant.

Tamer Seckin, MD, founder of the Endometriosis Foundation of America (EndoFound) and the author of The Doctor Will See You Now: Recognizing and Treating Endometriosis, indicates the following symptoms:

• You may experience cramping and intense pain with menstruation; think throbbing contractions or sudden, sharp, stabbing pains that may leave you breathless. Shireen Hand, a blogger for Endometriosis News, described it as an “electric shock.” It may start before menstruation and not let up for several days. Some women refer to them as “killer cramps.”
• You may feel a dull, throbbing pain around the time of ovulation.
• GI distress in common, including bloating, gas, and cramps, sometimes accompanied by diarrhea and constipation. Symptoms are worse around menstruation.
• Pain during sexual activity can feel like sandpaper, along with sharp pains that radiate toward the abdomen, notes Hand.
• You may have painful bowel movements or urination due to irritated tissue.
• Neuropathy may cause sciatica (a sharp, burning, radiating pain down your leg, inner thigh, or back) that can make walking or even crossing your legs uncomfortable.

Don’t Wait to Talk With Your Doctor

It takes on average 3 to 11 years from onset of symptoms for women to receive a correct diagnosis, according to past research, so don’t wait around if you are having issues. (5) Although endometriosis is incurable at this point, there are treatments that can help manage pain and other symptoms. For some women, endometriosis symptoms go away on their own once they’ve reached menopause.

Why Does Endometriosis Cause Pain?

The severity of the disease is not related to the degree of pain. You can have a very early case and feel pain much worse than another woman whose disease is much more advanced. The level of pain depends on:

• Location If the lesions are in an area rich in nerve endings, the pain will be more intense, noted an article published in Human Reproduction Update. (6)
• Swelling Lesions swell and bleed much like your uterine lining does during your menstrual cycle. This causes pain because it is expanding and bleeding in an area that has limited room and has no way to expel the blood, notes the Office on Women’s Health. (7)
• Scarring Scarring of surrounding tissue by the lesions can also increase pain levels by causing organs to stick together, per ACOG. (8)

Pain During and After Sex: Endo Can Cause Painful Sex

Endometriosis can cause pain, and sometimes very severe discomfort, during or after sexual penetration or orgasm. It can be difficult to seek treatment for this sensitive problem.

Painful sex, coupled with the anticipatory fear of that pain, can be a big turnoff.

Unfortunately, many women are too embarrassed to talk with their physician about the pain associated with sexual intercourse, or they think there is nothing that can be done and try to ignore it or live with it. Some women are told that their pain is psychological or somehow less than real.

The truth is that women with endometriosis don’t have to live with pain that interferes with intimacy or sexual relationships. Treatments are available, and sex doesn’t have to hurt.

Related: Endometriosis and Severe Sex Pain: How to Cope

What Is Bowel Endometriosis?

Since many people think of endometriosis as only a gynecological issue, bowel endometriosis can be tricky to detect.

Bowel endometriosis, sometimes misdiagnosed as irritable bowel syndrome (IBS), occurs when lesions grow on the peritoneum (the membrane lining the inside of the abdomen and covering the abdominal organs), the rectum, the intestines, and other deeper bowel levels.

Related: Unrecognized Endometriosis: Despite 40 Years of Severe Pain Misdiagnosed as IBS, This Woman Didn’t Give Up

Less Common Symptoms of Endometriosis

There is also something known as silent endometriosis, when you don’t feel any pain.

Research published in the Journal of Assisted Reproduction and Genetics suggested that 20 to 25 percent of endometriosis patients are asymptomatic. (9) The only way some women discover they have the disease is when they seek help for unexplained infertility. The lack of pain, however, does not mean that the condition is in its early stages; it is possible to have no obvious symptoms and still have advanced disease.

Related: The Question of Which to Treat First: Endometriosis or Fertility Problems?

Conditions Commonly Confused with Endometriosis

The symptoms of endometriosis can easily be confused with other conditions, so it is important to see your gynecologist to obtain a correct diagnosis. According to Penn State Hershey Medical Center, the pelvic pain you feel could also be related to: (10)

• Adenomyosis, in which endometrial tissue infiltrates the wall of the uterus instead of getting outside the uterus
• Appendicitis
• Celiac disease
• Diverticulitis
• Ectopic pregnancy
• History of sexual abuse or trauma
• Inflammatory bowel disease
• Interstitial cystitis
• Intrauterine device (IUD)
• Irritable bowel syndrome
• Miscarriage
• Pelvic cancer
• Pelvic inflammatory disease
• Severe kidney or urinary tract infections
• Uterine fibroids (benign tumors in the uterus wall)
• Uterine polyps