What Is Interstitial Cystitis

This article discusses the distressing but relatively uncommon condition of interstitial cystitis, which mainly affects the urinary system. Interstitial cystitis can also potentially bring further challenges to the functioning of other systems, including the reproductive and nervous systems. 

As mentioned above, interstitial cystitis is primarily a disorder of the urinary system, typically producing symptoms of pain, urgency and frequency when urinating. The causes are quite varied, and in-depth investigations may be required to establish why the condition is occurring. Often, the diagnosis is made when other causes, which have similar symptoms, cannot be found or have been ruled out through tests and investigations.

Read on to learn more about this condition, including the causes, signs, symptoms, treatments, risk factors and complications. Check the FAQ section at the end of this article for further advice.

Overview

Interstitial cystitis is a relatively uncommon condition and as such, is not particularly well understood. As there is not one single and certain cause of the disorder but multiple potential causal factors, there is not only one approach to managing it. Treatment will depend on identifying the underlying cause and managing that with the hope interstitial cystitis will respond accordingly. 

Two different forms of interstitial cystitis have been identified: ‘Hunner lesion interstitial cystitis’ and ‘Non-Hunner lesion interstitial cystitis’. The former is where ulcers called ‘Hunner's ulcers’ are found in the bladder; the latter is where the condition exists without these ulcers being identified.

Interstitial cystitis affects men, women and children, although nine out of ten cases are found in women.

Inflammation of the bladder lining occurs due to the protective tissue layer breaking down, resulting in a loss of the bladder's ability to store urine effectively and pain, which can be a feeling of pressure or spasmodic. Interstitial cystitis is also known as ‘painful bladder syndrome’, ‘chronic pain pelvic syndrome’ and ‘frequency-urgency-dysuria syndrome’. 

Diagnosis can be a lengthy and complicated process, potentially taking a considerable length of time.

Causes of interstitial cystitis

Interstitial cystitis is quite a poorly understood condition, often the cause is relatively hard to determine but the following are some of the potential causes:

• Genetics
• Autoimmune disorders causing inflammation 
• Allergies
• Vascular disorders
• Bladder defects – damage to the bladder lining can cause urine to become irritating
• Abnormal substances in urine
• Unusual infections
• Pelvic floor issues
• Chronic urinary infections
• Chronic conditions: fibromyalgia, ME, chronic fatigue syndrome, irritable bowel syndrome or IBS

Signs and symptoms of interstitial cystitis

Major Symptoms

• Pelvic pain, pain in the urethra, pain in the vagina with possible painful sexual intercourse
• Urgent need to urinate up to 60 times daily with associated pain
• Waking in the night to urinate

Other Symptoms

• Urinary incontinence
• Haematuria or blood in the urine

Management and treatment for interstitial cystitis

The management and treatment of interstitial cystitis depends on the identified cause of this condition. If the Hunner lesions are present, then the following methods and medications may be used:¹

• Elimination diet 
• Hydrodistension 
• Cystoscopic treatment 
• Cyclosporin
• Surgery 

Non-Hunner Lesion interstitial cystitis where comorbidities (other conditions) are identified:

• Elimination diet 
• Drugs 
• Physical therapy for pelvic floor muscles
• Botox
• Nerve blocks
• Neuromodulation
• Complementary therapies 

Diagnosis of interstitial cystitis

Often, the first step to achieving a diagnosis of interstitial cystitis is ruling out other potential causes of the main symptoms, which could include: 

• Bladder infection or UTI (Urinary Tract Infection)
• Bladder cancer 
• Radiation therapy 
• Nerve problems 
• Systemic disease
• Drugs and other chemicals 

Then, any of the following investigations may be carried out, beginning with the general examination.

• General examination 
• Pelvic examination 
• Urinalysis
• Cystoscopic examination 
• Bladder distension (with water and then using a cystoscope)
• Biopsy

Risk factors

Risk factors for developing interstitial cystitis include:²

• Being female 
• Increased risk with age (40 plus)
• Having a chronic pain disorder
• Depression 
• History of an inflammatory disorder
• Prior damage or injury to the bladder
• Having red hair and fair skin 
• Having a family member with interstitial cystitis 
• Having an autoimmune disorder 
• Dietary factors such as caffeine or stimulating foodstuffs 

Complications

If interstitial cystitis continues without resolving on its own or without treatment, complications could occur. Complications that develop often relate to fibrosis, which is the formation of scar tissue leading to reduced capacity in the bladder and worsening symptoms. The following complications could occur:³

• Psychological deterioration due to sleep problems, sexual dysfunction, anxiety and depression
• Infection
• Bleeding
• Trauma
• Perforation of the bladder
• Complications of anaesthesia

FAQs

How can I prevent interstitial cystitis?

In most cases, interstitial cystitis cannot be prevented, but steps can be taken to lessen its impact on your life. Prompt treatment and awareness of the symptoms may prevent them from developing and further damaging the bladder. Managing other health conditions and awareness of any triggers, such as dietary factors, may help to manage this condition. Strengthening the pelvic floor muscles and maintaining hydration levels also may help. If you smoke, stopping may help, as any chemicals, such as those found in tobacco, can irritate the bladder.

How common is interstitial cystitis?

In the UK, interstitial cystitis affects around half a million people, 90% of which are women.

When should I see a doctor?

Make an appointment with your doctor if you notice any of the symptoms, particularly if you are experiencing pain or urinary urgency and frequency. Any blood in the urine requires an urgent appointment with your doctor. It is worth noticing any changes to your normal patterns when urinating that may indicate a problem.

Summary

This relatively uncommon condition is very painful and distressing, with the potential to disrupt normal social functioning. It is poorly understood and may involve an in-depth investigation to uncover the cause. Awareness of your risk and the symptoms is important to set you on a treatment or management path as soon as possible.