Interstitial Cystitis

Interstitial cystitis (IC), or Painful Bladder Syndrome (PBS), is a chronic syndrome characterised by the progressive destruction of the most superficial layer of the bladder (the GAG layer and umbrella cells), which makes it increasingly sensitive to any painful, acidic, tactile, thermal, dietary, infectious stimulus, etc.
This destruction is not due to bacterial infections.

Interstitial cystitis and Painful Bladder Syndrome are often associated as they share the same triggering cause, similar symptoms and similar treatment, but many authors consider them to be two different conditions.

In classic IC, the bladder wall may show bleeding points (glomerulations) and in 10% of patients it may also present true lesions (Hunner’s ulcers). In PBS there is thinning of the bladder wall, but without lesions. The symptoms are similar.

• Symptoms of Interstitial Cystitis
• Who it affects
• Causes of Interstitial Cystitis
• Diagnosis of Interstitial Cystitis
• Treatment of Interstitial Cystitis

Symptoms

What are the symptoms of interstitial cystitis?

Interstitial cystitis and Painful Bladder Syndrome are characterised by:

• increased urinary frequency (average intervals of 30 minutes)
• urgency (perceived as painful, of sudden onset, which can no longer be postponed)
• suprapubic pain (perceived as a feeling of pressure, sometimes as actual pain, which increases with bladder filling and decreases with emptying)
• very limited bladder capacity (50–55 ml)
• nocturia (8–10 nighttime voids)

Men may also experience symptoms such as pain in the scrotum, the perineum and during ejaculation.

Symptoms tend to worsen in the premenstrual phase, in association with the consumption of acidic foods, in relation to urinary concentration, physical activity or prolonged sitting.

Patients with interstitial cystitis often also present with disorders and pain syndromes affecting other systems:

• Pelvic muscle contraction
• Painful and disabling menstrual cycle
• Dyspareunia 
• Vulvodynia
• Allergies
• Systemic lupus erythematosus
• Irritable bowel syndrome
• Fibromyalgia
• Chronic fatigue syndrome and back pain
• Headaches
• Temporomandibular disorder
• Endometriosis
• Obstructed defecation syndrome
• Tarlov cysts
• Sjögren’s syndrome
• Hashimoto’s thyroiditis

As a result of these symptoms, the quality of life of those affected is reduced; indeed, many women report decreased energy, a reduction in the number of daily activities carried out, social withdrawal, difficulties in relationships, mood changes up to depression and, in rarer cases, total confinement to bed.

“Encourage me; now that I have finished writing, it feels as though I have not conveyed what I have been through and what I am still going through......... You can reach the point of being afraid that the doorbell might ring and not being able to go and answer it; I have been wearing an adult nappy for years now, I can no longer travel by train or bus, I am only able to sit on cushions.”
31stAB12  08/12/2015 (Cistite.info)

“I can’t manage for long.... my bladder fills up straight away and I feel the heaviness in my lower abdomen, which disappears as soon as I urinate and then leaves me alone for about an hour… if I drink a lot, I start to feel the discomfort even sooner…. My bladder has a maximum capacity of 250; I retain a minimum of 90–100.... the average is about 180cc...”
Sarissimap  23/10/2012 (Cistite.info)

Prevalence

Who does interstitial cystitis affect?

Interstitial cystitis affects between 10 and 510 cases per 100,000 inhabitants. The wide variation depends on whether it is IC (rarer) or PBS (more common).

It predominantly affects young women of childbearing age (men account for only 10%).

Further information: Epidemiology of interstitial cystitis

Causes

What are the causes of interstitial cystitis?

The main causes of interstitial cystitis are:

• Epithelial dysfunction. For reasons that are still unclear, the bladder wall (urothelium) progressively loses its GAGs (protective lining cells), becoming more sensitive to the irritating substances contained in urine and to any stimulus, even those that are not painful.
• Mast cell hyperactivation. There is an excessive response of mast cells, inflammatory cells present in the urothelium, which cause vasodilation, recruitment of other inflammatory cells, muscle contractions, and neurological alteration.
• Neurogenic inflammation. Prolonged inflammation shifts the origin of pain from the bladder tissue to increasingly deeper and more central neurological levels: the pain and inflammation are no longer caused by local damage, but by neuropathy.
• Pelvic floor contracture. The urethra, vagina, intestine and pudendal nerve are embedded in the pubococcygeal musculature. This pelvic contracture compromises the functioning of these organs as they receive less blood, oxygen and nutrients.

These factors influence one another and each becomes both cause and consequence of the other, establishing an increasingly complex vicious circle, independent of the cause that initially triggered it all.

In-depth: Causes of interstitial cystitis

Diagnosis

How is interstitial cystitis diagnosed?

The diagnosis of interstitial cystitis is made through cystoscopy with hydrodistension. This examination, usually carried out under general anaesthesia, involves viewing the bladder walls through a cystoscope, following dilation of the bladder by filling it with saline solution, in order to better highlight any Hunner’s ulcers and glomerulation.

The diagnosis may also make use of the Parsons test (or potassium test), which consists of instilling potassium into the bladder. If there is a GAG deficiency, the potassium is able to pass into the underlying interstitial layer, causing severe irritation and pain.

Recently, the diagnosis of interstitial cystitis can be made exclusively on the basis of characteristic urinary symptoms and the exclusion of conditions with similar symptomatology.

Because of symptoms similar to other infectious urological or gynaecological conditions, the diagnosis of interstitial cystitis usually comes after numerous specialist consultations, invasive examinations and diagnoses of psychosomatisation.
Unfortunately, the average waiting time between the first symptoms and the diagnosis is 5–7 years, after having consulted an average of 4–5 specialists among urologists and gynaecologists.

Our association has created a list of recommended and affiliated professionals who can help you obtain a diagnosis and begin your healing journey. By becoming a member, you will be able to obtain numerous benefits and financial concessions on products and medical consultations.

In-depth: The diagnosis of interstitial cystitis

Treatment 

What are the therapies for interstitial cystitis?

According to the recommendations of the Italian Society of Urology (SIU, Società Italiana di Urologia), there are five levels of therapeutic intervention. On the front line are the least invasive treatments and therapeutic strategies, free from side effects. As the levels increase, so do therapeutic invasiveness and the associated risks.
Ogni livello successivo al primo andrebbe proposto solo qualora quello precedente non avesse prodotto risultati apprezzabili.

First-line therapy

• Health education (knowledge of bladder anatomy and physiology, explanation of the condition and its therapeutic options)
• Modification of behaviours that may trigger symptoms (stress management, sport, diet, bladder training)
• Elimination of concomitant conditions: Candida, cystitis and vulvo-vaginal infections, irritable bowel, constipation, collagen disorders, etc. As antibiotics have not demonstrated curative effects, you can try to combat urinary and genital infections with D-mannose and our Miriam Protocol.

Receive the Miriam Protocol free of charge

Second-line therapy

• Physical therapy to relax the pelvic musculature
• Oral therapy with GAGs, neuromodulators, muscle relaxants, antihistamines
• Electrical analgesic and muscle-relaxing therapy (TENS, SEF)
• Tibial nerve stimulation (acupuncture and SANS)
• Bladder hydrodistension
• Fulguration of Hunner’s ulcers

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Third-line therapy

• Bladder instillations

Fourth-line therapy

• Bladder infiltrations
• Sacral neuromodulation
• Hyperbaric oxygen therapy
• Oral administration of Ciclosporin (an immunosuppressant rather effective for IC/PBS, but with numerous side effects)

Fifth-line therapy

• Bladder surgery with substitution cystoplasty or urinary diversion with or without cystectomy (only in highly selected patients and when any other therapy has proved unsuccessful in controlling symptoms and maintaining a minimally sustainable quality of life).

 In-depth: Surgery in interstitial cystitis

The treatment of interstitial cystitis is currently only symptomatic and not curative, especially if the diagnosis is made very late. It has in fact been observed that the shorter the duration of the condition, the greater the therapeutic results. However, although interstitial cystitis is a chronic illness, improvements or remissions of symptoms are possible.

It is important to know that therapies may not produce immediate results; usually the first benefits are seen only after several months. Moreover, the response to therapy is entirely subjective: what is effective for one person may not be effective for another. For this reason, it is very rare for the first treatment to be effective for the patient; it is more likely that several approaches will need to be tried, adjusted according to the results obtained, before achieving appreciable improvement. This is because PBS/IC is caused by different factors acting simultaneously, which must therefore be addressed at the same time with multiple therapies.

Even during the course of therapy, the condition may have flare-ups. It is therefore normal for periods of wellbeing to alternate with moments of worsening.

In-depth: The treatment of interstitial cystitis

Bibliography

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2. “La calcolosi renale ed il dilemma della dieta. Falsi miti e ragionevoli certezze” P. Piana , pubblicato il 21/15/2012 su www.medicitalia.it
3. “Gli oligoelementi. Catalizzatori della nostra salute” F. Deville, Ed. Mediterranee, 2003
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5. “Cistite interstiziale : epidemiologia e presentazione clinica” Parsons CL Division of Urology, UCSD Medical Center, San Diego, Usa
   Clinical Obstetrics and Gynecology 2002 Mar;45(1):233-41
6. “Diagnosi della cistite interstiziale : attuali approcci alla diagnosi” Chai TC. Department of Urology, University of Maryland School of Medicine, Baltimore, Maryland Usa
   Clinical Obstetrics and Gynecology 2002 Mar;45(1):233-41
7. "Cistite interstiziale : patofisiologia e trattamento" Moldwin RM, Sant GR. Department of Urology, Long Island Jewish Medical Center, New Hyde Park, New York, USA
   Clinical Obstetrics and Gynecology 2002 Mar;45(1):233-41
8. IC/BPS: still “a hole in the air” or a complex general syndrome?”, Daniele Porru e Mario Cervigni, Lambert Academic Publishing 2012