Chronic pelvic pain, a condition affecting numerous women, is frequently misdiagnosed due to a common oversight: nerve damage. Experts highlight that while gynecological problems are often assumed to be the cause, underlying musculoskeletal or neuropathic dysfunction may be the true culprit, leading to years of suffering and ineffective treatments.
Lydia Kelly, 64, experienced years of debilitating pelvic pain that she described as sharp and stabbing, often rendering her unable to sit down. Her journey included consultations with a gastroenterologist for suspected digestive issues and a hernia specialist, leading to a colonoscopy and surgery, neither of which resolved her pain. Over-the-counter painkillers offered little relief.
It was only after being referred to a pain specialist, Dr. Khaled Ayazi, that Kelly's condition was identified as damage to a pelvic nerve, specifically the pudendal nerve. This nerve originates from the lower spine and plays a crucial role in sensation and movement in the genitals, anus, and pelvic floor muscles. Symptoms of pudendal nerve damage can include shooting pain, inability to sit for extended periods, and discomfort with tight clothing, significantly impacting social and sexual life.
Dr. Ayazi, who established the Pelvic Pain Management Service at the Royal Free Hospital in London, notes that many women face a similar lengthy diagnostic process. "Many women who see their GPs about pelvic pain are routinely sent to a gynaecologist who assumes it’s endometriosis," he stated. Endometriosis, a condition where tissue similar to the uterine lining grows outside the uterus, is a common suspect. However, statistics from Endometriosis UK reveal that only half of the over 250,000 laparoscopies performed annually in England result in an endometriosis diagnosis, leaving many women without a clear cause for their pain.
Dr. Rhiannon Bray, a consultant urogynaecologist, emphasizes that chronic pelvic pain, defined as pain lasting six months or more, is a frequent reason women seek gynecological care. She points out that a multitude of factors can contribute to pelvic pain, including endometriosis, adenomyosis, pelvic inflammatory disease, ovarian cysts, pelvic floor muscle overactivity, irritable bowel syndrome (IBS), surgical adhesions, and nerve-related pain. Hormonal changes, particularly after menopause, can also affect bladder and pelvic floor function, mimicking other conditions.
A significant misconception, according to Dr. Bray, is the belief that pain is always localized to the source of the problem. The complex network of nerves in the pelvis can lead to pain being perceived in areas different from the origin, complicating diagnosis. Bowel and bladder issues, such as IBS, interstitial cystitis, or recurrent urinary tract infections, can also manifest as pelvic pain and may be mistaken for gynecological problems.
Kelly's treatment involved a series of steroid injections around the affected pudendal nerve. While she required multiple courses of injections over three years, a less common treatment regimen according to Dr. Ayazi, the therapy provided significant relief. She also takes duloxetine, a nerve-blocker medication. The total cost of her treatment exceeded £8,000.
Experts stress that persistent pelvic pain should not be dismissed. Dr. Ayazi suggests that approximately half of those experiencing pelvic pain do not seek medical help, often due to cultural beliefs that women should endure such pain or the stigma associated with assuming a sexually transmitted infection. "The most important message is that persistent pelvic pain should never be dismissed as 'just being part of being a woman'," Dr. Bray concluded. "In many cases, there are identifiable and treatable causes, but they often require a holistic approach because several conditions may coexist."