Three Things Women With Chronic Pelvic Pain Need You to Know

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Painful bladder syndrome, also known as interstitial cystitis (IC), and endometriosis are common reasons for chronic pelvic pain. These conditions fall into a category of pain called, nociplastic pain, which is notoriously hard to treat. An estimated 8 to 10 percent, or 30 million, Americans suffer from one or more nociplastic pain conditions.

Diana is one of the 30 million. She was a 40-year-old wife and mother embarking on a real estate career when her pelvic pain began. She woke up one morning feeling pressure in her bladder and burning pain when she used the bathroom. Weeks passed with no improvement in her symptoms—and no signs of infection or other causes. She was referred to a urologist. who diagnosed her with interstitial cystitis (IC).

Diana’s pain then started spreading to other parts of her body. Over months, she developed rectal and vaginal burning, bloating, and cramps. The urologist directed Diana to gynecology to be checked for endometriosis, since many women with IC also have endometriosis. The gynecologist confirmed endometriosis.

Diana’s struggle with chronic pelvic pain highlights three things women living with chronic pelvic pain need you to know.

The pain from interstitial cystitis (IC) and endometriosis is difficult to treat.

IC and endometriosis are nociplastic pain conditions. Nociplastic pain is a relatively new medical condition; the term was only coined in 2016. Before this, only two categories of pain were recognized: tissue injury pain (e.g., bladder infection) and nerve pain (e.g., carpal tunnel syndrome).

Nociplastic pain arises when the healing from an injury, infection, or other problem in the body goes sideways. The result is inflammation in the nerves that disrupts the normal processing of pain signals. Over time, typically months, the nerves become abnormally sensitive to stimuli. Pain comes on faster, more intensely, and lasts longer. Even normal stimuli are reported to the brain as painful.

Nociplastic pain is notoriously difficult to treat and doesn’t respond to standard treatments like anti-inflammatory medications or procedures. With this pain type, the issue lies within the nervous system, even though the pain is felt in an organ like the bladder. Treatment has to be focused on where the problem is, the nervous system.

Women often suffer for years before nociplastic pain is recognized.

The diagnosis of nociplastic pain is often missed because it doesn’t appear on any standard medical tests. For example, Diana underwent three years of ineffective procedures and surgeries before a provider recognized she had mainly nociplastic pain and wasn’t on the correct treatment pathway.

A clinical tool called the central sensitization inventory (CSI) is fast, simple, and effective at detecting the condition. A score of 40 or higher on the CSI (within a range of 0 to 100) suggests a significant amount of symptoms are the result of nociplastic pain.

Diana’s CSI score was 70, indicating she primarily suffered from nociplastic pain. In my experience, when the CSI score is higher than 40, procedures and surgeries may not be helpful and could, in fact, worsen symptoms.

Many women with these conditions are in pain every day.

Diana experiences pelvic pain on a daily basis. Even with the correct treatment approach, the pain level is reduced but rarely eliminated. Better treatments are being researched but are not yet available. For example, Diana’s pain level never drops below a 6 on a 10-point scale. On bad days, her pain level reaches 8 to 10, making activities like cleaning, cooking, and picking up her daughter from school difficult.

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Her condition affects the entire family. She suffers from pain, and her family suffers when they see her in pain. Struggling daily instead of enjoying life together has been rough on her marriage.

Diana’s young daughter is affected, too. She completed a Mother’s Day project where she answered questions about her mom. Her daughter wrote: What does your mother like? sitting on the couch; What does she do to relax? relax on the couch; What does she do the most? sits on the couch. The answers and how Diana’s daughter saw her broke her heart.

Diana’s story is similar to that of many patients who struggle with chronic pelvic pain. I talk more in-depth about the approach to the treatment of nociplastic pain in my book, Sunbreak: Healing the Pain No One Can Explain.