Painful Bladder Syndrome & Interstitial Cystitis (IC)

What Is Painful Bladder Syndrome?

Painful Bladder Syndrome (PBS), also called Interstitial Cystitis (IC), is bladder pain that presents with urinary frequency, urinary urgency, and bladder pain. It's known to affect women primarily, but it can affect men and children too. An estimated 12 million people carry a diagnosis of PBS/IC. If you've been diagnosed, you're not alone, and there is help.

Definition: PBS/IC is oversensitivity of the bladder, whether or not inflammation is present.

Other conditions that can coexist with Interstitial Cystitis include:

• Allergies
• Migraines
• Vulvodynia
• Fibromyalgia
• Sensitive skin

Bladder Anatomy

The bladder is a muscular bag that stores urine until it's ready to be expelled from the body. The triangular lower end of the bladder is called the trigone. The trigone is estrogen dependent, so whatever occurs in the vagina, such as an infection or irritation, can affect the trigone in the same way. This is the part of the bladder that's most sensitive to pain.

How Is Painful Bladder Syndrome Diagnosed?

Diagnosis of PBS/IC is based on:

• The presence of bladder pain, urinary frequency, and urgency
• Ruling out other diseases that could cause the same symptoms
• APF biomarker testing, a test to detect antiproliferative factor in the urine, still in the preliminary stages of development
• Amino acid marker testing: people with PBS/IC process the amino acid tryptophan differently than those without it, though this test is also still in development

Interstitial Cystitis is sometimes misdiagnosed as one of the following conditions:

• UTI
• Overactive bladder
• Hemorrhagic cystitis
• Pudendal neuralgia
• Prostatitis
• Endometriosis

The AUA's 6-Step Treatment Guide

The American Urological Association (AUA) outlines six steps for treating Painful Bladder Syndrome/Interstitial Cystitis.

Step 1: First-line and self-care measures

• Drink water: enough to keep urine from being too concentrated. Dark yellow urine means you're too concentrated, while clear urine may mean you're drinking too much water.
• Diet modification, such as following an IC-friendly diet
• Muscle relaxation, to improve blood flow to the pelvic muscles, or a relaxation class
• Over-the-counter supplements, such as acid-neutralizing or acid-reducing products (always consult your doctor before starting any new supplement or medication)

Step 2: Second-line treatments

• Oral medications, such as Elmiron (which carries side effects including hair loss, diarrhea, and changes in liver enzymes), antihistamines, or low-dose antidepressants to help calm the nerves
• Bladder instillations, which coat and help numb the bladder
• Pelvic floor physical therapy: a 2008 study found pelvic PT to be very effective in reducing IC symptoms. The majority of patients with IC also have pelvic floor dysfunction, meaning the pelvic floor muscles become spastic and don't function properly.

Step 3: Third-line treatments

If Hunner's lesions, ulcers associated with a strong inflammatory response in the bladder, are present, treatment can include fulguration, laser therapy, steroid injection, or LiRIS/LiNKA. These lesions are typically biopsied to rule out bladder cancer, though only a small percentage of patients actually have them. Hydrodistention with cystoscopy is currently used mainly as a diagnostic tool rather than a treatment, though this can vary by physician.

Step 4: Fourth-line treatments

Neuromodulation targets the nerves to help regulate pain. There are two main types: sacral/pudendal neuromodulation (surgical) and posterior tibial nerve stimulation (non-surgical), also known as Urgent PC or PTNS. PTNS decreases pain memory in chronic pain to down-regulate pain at both the conscious and subconscious level, with a reported success rate of about 70%. It's typically done twice a week for six weeks, then reevaluated with a gradual weaning based on the patient's response. Botox is another option in this step, helping to numb and calm the nerves.

Step 5: Experimental procedures

Strong steroid and immunosuppressant medications may be considered.

Step 6: Surgery

Bladder removal is the last resort. Most people with IC respond well to the treatments listed in the earlier steps before surgery becomes necessary.

Painful Bladder Syndrome in Women

During pregnancy: There's limited scientific data on IC during pregnancy. A 1989 study found that IC symptoms didn't change much until the third trimester, and even then showed only a small change. Closely coordinate your treatment plan during pregnancy with your OB-GYN.

Genetics: IC has a small genetic component, meaning it could be passed on to your child, though research suggests environmental influences play a greater role than genetic predisposition.

Conception: IC doesn't appear to influence a woman's ability to conceive. Bladder pain from IC can interfere with sexual activity, but it wasn't found to interfere with conception itself when intercourse was possible. Timing intercourse to your most fertile window or ovulation may help you cope with pain while trying to conceive.

Intimacy: An estimated 85% of women with Interstitial Cystitis also have vulvodynia. Sexuality isn't often addressed by doctors, but IC can affect all aspects of sex. Pain during intercourse, and flare-ups following it, can lead to a cycle of avoidance, decreased desire, guilt, depression, and relational stress. Men may report similar issues, along with erectile dysfunction and painful ejaculation.

Tips for intimacy:

• Try to plan intimacy for when you feel your best, such as after receiving IC treatments that help with pain
• Try out products, such as sex toys or a particular lubricant, on your own first. A successful trial by yourself can boost your confidence and interest
• Think outside the box: consider options other than traditional penetrative intercourse, such as outercourse
• Work with a psychologist or counselor if you're feeling depressed, or consider a sex therapist or sexual medicine specialist

Painful Bladder Syndrome in Men

• IC in men can be missed because it's less common in men, and its symptoms mimic other conditions such as prostatitis, chronic pelvic pain, prostate enlargement, and urinary tract or prostate infection
• One factor found in men with IC is the urine marker for antiproliferative factor (APF)
• Men are less likely to report and seek help for pelvic pain
• Pelvic floor dysfunction is also prevalent in men with IC. Internal massage of the pelvic floor muscles is done through the rectum, and many male patients are reluctant to pursue therapy this way, which can make pain management more difficult

Painful Bladder Syndrome in Children

• Very little is known about IC in children
• Many adults diagnosed with IC recall symptoms since childhood
• Symptoms are similar to those in adults: urinary urgency, frequency, and pelvic pain
• Diagnosis in children is difficult and made largely by ruling out other possible causes
• Treatment options may be similar to those for adults, but at lower, pediatric-appropriate doses and at the discretion of the medical team

Physical Therapy for Painful Bladder Syndrome

• Most patients I see following a PBS/IC diagnosis are in pain and also have pelvic floor dysfunction, meaning the pelvic floor muscles are tight rather than relaxed. On exam, I may find trigger points in these muscles.
• My therapy sessions are customized to each patient's needs based on what I find during the initial assessment. If I find tightness, I include stretching and relaxation techniques, along with home exercises to maintain progress between sessions. Other manual techniques may include trigger point release, joint mobilization, and nerve gliding or nerve releases.
• Biofeedback can help down-regulate and relax the muscles, or help train muscle coordination.
• Breathing plays a key role in managing pelvic pain, particularly diaphragmatic breathing.

Conclusion

• There is help and hope, even after a diagnosis of Interstitial Cystitis or Painful Bladder Syndrome
• The American Urological Association outlines six specific steps that, when followed closely, can be effective in managing IC
• IC can be seen in men, women, and children
• Physical therapy has been found to be very effective in conjunction with other treatments for managing IC