Prof. Francesco Cappellano, Head of Urology at Fakeeh University Hospital strongly believes that awareness and understanding is a critical step towards treating a condition that affects 1 in 7 women globally.
UAE, Dubai. 27 May 2021: The first step towards solving any problem is to acknowledge that it exists. This is a sentiment that most of us are familiar with. However, when it comes to our health and well-being, too often there tends to be an equally self-driven and external pressure to put on a brave face and push through. This holds especially true when it applies to certain health conditions that can be a source of fear, embarrassment, or even shame.
Chronic pelvic pain occurs in locations such as the pelvis, genital area, lower abdominal wall, lower back, or buttocks, and is serious enough to cause disability or lead to long-term ￼. As May is Pelvic Pain Awareness Month, according to the International Pelvic Pain Society, it’s time we have an open conversation about chronic pelvic pain, how impactful a diagnosis or misdiagnosis can be, and what can be done to address it.
Here are four reasons why we need to start talking about chronic pelvic pain more:
- Though awareness is low, it is known to affect approximately 1 in 7 women globally
Chronic pelvic pain may not be as well-known as other chronic conditions women experience but is becoming more prevalent around the world. It tends to manifest itself differently from person to person, often starting in one place before progressing to another. It is commonly associated with a range of uncomfortable symptoms such as constipation, urinary hesitancy, frequency, urgency, painful bowel movements, and sexual dysfunction related to the loss of libido.
Some of the few known causes of chronic pelvic pain are endometriosis and Interstitial Cystitis (IC), where respectively tissue that normally lines the inside of the uterus – the endometrium – starts to grow outside the uterus and the bladder mucosa ( IC) get inflamed by unknown causes. The prevalence of endometriosis among women in the UAE is approximately 1.5% and these women tend to experience even more severe chronic pelvic pain (18.2%), further driving the need for proper diagnosis and treatment. An updated epidemiologic research conducted in 2006 suggests that up to 12% of women may have early symptoms of IC.
- It is one of the most underdiagnosed and misdiagnosed conditions for women and men
What makes chronic pelvic pain difficult to diagnose is that pelvic pain is a multisystem disorder, which includes sexual, bowel, urinary, and gynecological symptoms, among others. With several factors in play, it can be tough to determine a clear cause of pain with a diagnosis and various emotional factors can occur as a side effect.
According to Prof. Francesco Cappellano, Head of Urology at Fakeeh University Hospital, “Chronic pelvic pain is most often assumed to be a side effect of a urinary tract infection (UTI) or labeled as chronic prostatitis in men. As a result, many patients are treated with an antibiotic prescription for years and don’t learn their true condition until after several referrals and 3-5 years on average. This can exacerbate the condition as the longer it takes to diagnose, the more chronic the pain becomes and the harder it is to treat.”
On effective diagnostic measures, he added, “Pain or a prickling sensation can often start in one place before progressing as far as the groin, inner leg, buttocks, and abdomen. The pain is reported to be worse upon sitting and usually increases gradually during the day and night. Many patients experience pain at bedtime and face difficulty in falling asleep.”
- It can be difficult to treat due to a lack of specialist knowledge and understanding of its effects
When specialist care is involved in the management of chronic pelvic pain, it can often spread between multiple specialties such as urology, gynecology, urogynecology, colorectal services, pain medicine, and even occasionally spinal services. This increases the risk of patients being passed around between different teams and not receiving consistent or effective care.
Regarding challenges around treatment, Prof. Cappellano said, “The most common patient profile we receive is one who has seen multiple physicians, failed multiple pharmacologic treatments, failed physiotherapy and more, all while still being severely disabled by pain with no evidence of any organ disease.”
- Long-term emotional toll
One aspect that most people don’t consider when it comes to chronic pelvic pain, is the emotional toll it can take on the patient. When an illness is difficult to be effectively diagnosed and treated, other complicating factors such as depression, anxiety, poor sleep, difficulty with work and/or relationship issues can set in.
Weighing in on the emotional burden, Prof. Cappellano says, “If left unaddressed, years of chronic pelvic pain can leave a patient feeling more distressed, uncertain, and helpless, leading to strong secondary symptoms requiring psychiatric care up to 4% of cases. To all patients, I would say: pain is never normal. We need to normalize the conversation around chronic pelvic pain and urge those who suffer through the symptoms each day to seek the help they need.”
Prof. Cappellano shares his tips on the best way to manage chronic pelvic pain:
- Find the right clinician and commit – Knowing the complex ways in which chronic pelvic pain can manifest, it is important to have a tailored solution specific to each patient. This makes the doctor-patient relationship more crucial than ever, so make sure you find the right doctor for you and avoid getting multiple opinions. The ideal candidate should give equal attention to your physical and psychological symptoms when treating chronic pelvic pain.
- Use medication responsibly – It is best to think of the short-term benefit and the long-term impact when it comes to pharmacological treatment. In the short term, pain can be addressed by over-the-counter analgesics such as paracetamol, ibuprofen, or aspirin. If these do not work for you, please speak with your doctor who may recommend a prescription drug for you instead. However, I do not recommend relying on prescription drugs as a long-term solution.
- Physical therapy – This can include hot applications, positioning, stretching exercises, traction, massages, or ultrasound therapy. Based on the severity of your physical symptoms, pelvic floor training may also be recommended by your doctor.
- Psychophysiological therapy – Remember not to undermine the psychological aspect of physical conditions like chronic pelvic pain. For this, I would recommend relaxation therapy, counseling, a stress management program, and biofeedback techniques. With this combined with physical therapy, both frequency and severity of chronic pain may be reduced.