Bladder Pain Syndrome: Coping from a Mental Health Perspective

What is Bladder Pain Syndrome?

Bladder pain syndrome, otherwise known as Interstitial Cystitis (IC), is a chronic pain condition that affects approximately 3-8 million individuals in the United States alone. It is more common in women, though the rates are increasing in men. The American Urologic Association (AUA) defines IC as an unpleasant sensation that appears to be related to the bladder that lasts more than six weeks, with no infection or other identifiable causes.

IC is not the same as having a urinary tract infection (UTI), and it cannot be treated with antibiotics, though symptoms may mimic UTIs. Primary symptoms of IC include:

• Pelvic pain, urogenital floor pain or dysfunction and external genitalia pain.
• Urinary urgency, frequent urination and bladder pressure/discomfort.
• Sexual dysfunction or pain during intercourse.

There is no single “cause” of IC, and multiple factors may contribute to its’ development. Diagnosing IC can be challenging because of its diverse symptoms and the necessity to exclude other potential conditions. This often results in a prolonged journey for individuals seeking a diagnosis.

Research suggests that symptoms often present as different “subgroups” including “widespread” (pain that spreads to other areas of the body) to “localized” (pain in the bladder only). Individuals with localized symptoms may experience Hunner’s lesions, which are visible patches of inflammation on the bladder diagnosed via cystoscopy. However, most individuals have no visible signs of bladder damage.

“IC symptoms can be intense and debilitating, with some individuals experiencing symptom flares that can last days to weeks and result in increased distress and limited overall functioning,” says Dr. Valery Bodziony, a Health Psychologist practicing at St. Elizabeth Healthcare.

Management of IC

The AUA recommends both medical and non-medical interventions in the treatment of IC. Medical interventions include medications, bladder instillations, neuromodulation, surgical procedures and more. Non-medical interventions include pelvic floor physical therapy (PFPT), diet and lifestyle changes, self-management strategies and learning coping skills for stress and pain. It is important to work with your doctor and multidisciplinary team to come up with a treatment plan that works best for you and your experience of IC.

IC and Mental Health

IC not only impacts physical health but also has a significant impact on mental health.  Individuals with IC often experience emotional distress due to the negative impact of pain and urinary symptoms on quality of life and overall functioning. This includes their social life and relationships, work, day-to-day activities, mood, stress and sexual functioning. Individuals may also experience emotional distress related to challenges in obtaining a diagnosis and invalidation or lack of understanding from loved ones and medical providers.

“The connection between physical symptoms and mental health symptoms is bi-directional, meaning IC symptoms can lead to emotional distress, and emotional distress can further worsen IC symptoms,” explains Dr. Bodziony. Common mental health difficulties in individuals with IC include:

• Anxiety.
• Depression.
• Post-traumatic stress or medical trauma.
• Panic attacks.
• Suicidal thoughts/ideation.
• Grief/loss associated with symptoms.
• Loss of sense-of self, purpose or self-worth.

“If you are experiencing any of these mental health symptoms and difficulties, know that you are not alone and that there are promising treatments to help manage the physical and emotional impact of IC,” says Dr. Bodziony. Working with a health psychologist alongside your medical providers can provide you with support, coping skills and empowerment to live meaningful and fulfilling lives while successfully managing IC symptoms.

Coping with IC through Self-Management

• Use relaxation strategies like guided imagery, progressive muscle relaxation, body scans, deep breathing or other relaxing activities (listening to music or taking a warm shower).
• Develop a coping plan for pain, stress and flares. Having a written plan can help you remember to use it when needed.
• Establish a IC-friendly diet, avoiding foods that may trigger symptoms, such as acidic foods.
• Improve sleep with healthy sleep habits, like maintaining a consistent sleep schedule, limiting screen time before bed and using relaxation techniques.
• Engage in bladder training techniques to retrain the brain-bladder connection and reduce frequency and urgency.
• Manage painful emotions (anxiety, sadness or anger) by scheduling pleasant activities, re-engaging in valued life activities, using distractions and grounding techniques.
• Identify unhelpful automatic thoughts and replace them with more helpful, self-compassionate thoughts.
• Use assertive communication to express your feelings and needs regarding symptoms to others, including loved ones and medical providers.
• Create a plan for intimacy that fits your needs and reduces the chance of pain during intercourse and/or symptom flares.

Resources

If you are experiencing symptoms of IC or would like to talk to a provider, utilize one of the following resources at St. Elizabeth:

• Urogynecology providers
• Health Psychology
• Pelvic Floor Physical Therapy

Other resources:

• Interstitial Cystitis Association
• Interstitial Cystitis Network

If you or someone you love is struggling with emotional distress or a mental health crisis, help is available. Call or text 988 Lifeline at any time. It is free, confidential and available 24/7.