Interstitial cystitis (IC), (also called bladder pain syndrome [BPS]) is an unpleasant condition with several symptoms which can be debilitating and have an impact on quality of life and the mental wellbeing of those affected (Chen et al, 2022). Despite research, the disorder remains poorly understood but over time, treatment and management strategies have evolved to help control the effects and symptoms the disease causes. This article hopes to give nurses and non-medical prescribers information on recognition, diagnosis and treatment with the aim of increasing their confidence when they encounter patients with either a suspected or confirmed diagnosis.  
 

PREVALENCE RATES  


Once considered a rare condition, in recent years prevalence rates have increased significantly, largely because of greater clinician awareness (Moutzouris and Falagas, 2009), and more inclusive diagnostic criteria (Davis et al, 2015). Interstitial cystitis can affect both males and females, but estimates indicate that nine out of 10 cases occur in women, with 75% of these in those over the age of 30 (Urology Foundation, 2022). 

SIGNS AND SYMPTOMS  


The condition can present with a variety of signs and symptoms, many of which are shared by other conditions, the commonest of these being, overactive bladder, vulvodynia, recurrent urinary tract infections (UTIs) and endometriosis (Bogart et al, 2007). This makes diagnosis difficult and, as a result, it may not be confirmed for years after initial onset. Initially, there is a gradual appearance of symptoms which may be mild and intermittent early on in the disease process, becoming more constant and increasing in severity over time (Moutzouris and Falagas, 2009). Symptoms are variable from person to person. Some of those affected may suffer with a feeling of pressure or sometimes tenderness in the pelvic area with associated discomfort. Symptoms usually worsen over the first five years and then settle, but there may be periods where symptoms flare up again (Urology Foundation, 2022).  

Red Flags 

  • Majority of cases occur in women over the age of 30  
  • Patients experience multiple signs and symptoms, many of which are shared by other conditions making diagnosis difficult  
  • Symptoms may be mild at onset, becoming more severe over time  
  • Even when symptoms settle, there may be intermittent flare ups. 

Additional urinary symptoms  


These include (Mishra, 2015; National Institute of Diabetes and Digestive and Kidney Diseases [NIDDK], 2017):  
  • Frequency and urgency  
  • Pain.  

Frequency and urgency  


Frequency is the need to pass urine many more times than would be expected in relation to the amount of fluid ingested, which may be accompanied by urinary urgency, a need to pass urine when the bladder is not full and the feeling that urination cannot be deferred. In health, most people need to pass urine between four and seven times each day, but in those with IC the need to urinate, day or night, may occur as many as 60 times a day in severe cases (Urology Foundation, 2022).  
 

Pain  


For the majority of patients with IC, the need to pass urine is at least eight times per day (Mishra, 2015). The degree of pain worsens until the patient urinates, and usually improves for a while once this has taken place. Patients with severe disease need to pass urine very frequently, often every five to 10 minutes (Mishra, 2015), which is clearly distressing and will severely impact on the ability to live a normal life. Some people may have pain without urgency or frequency, but pain is rarely constant and may go away for weeks or sometimes months before recurring (NIDDK, 2017). This pain may originate from a spasm in muscles of the pelvic floor, which are attached to the pelvic bones supporting the bladder, bowel, uterus or prostate, and the pain from pelvic floor muscle spasm can get worse during sexual intercourse (NIDDK, 2017).  

There are also some unusual symptoms of the condition, which are broadly classified as obstructive or non-obstructive urinary symptoms (Table 1). 

Table 1: Unusual symptoms of interstitial cystitis (Mishra, 2015) 

PATHOPHYSIOLOGY  


The underlying processes associated with the disease are complex and remain poorly understood. A simple explanation will therefore be given here. A number of possible causes have been investigated and one theory is that the protective bladder lining in healthy individuals is damaged allowing toxic substances to penetrate the epithelium and activate sensory nerve endings (Moutzouris et al, 2008).  

The following have also been suggested as possibly being involved in disease onset (Interstitial Cystitis Association, 2015; Rovner, 2020):  
  • Pelvic floor dysfunction: problems with the muscles in the lower pelvic area which in IC causes a poor urinary stream and the need to bear down to pass urine, and possible painful intercourse  
  • Disruption of the proteoglycan/ glycosaminoglycan (GAG) layer: malfunctioning of this layer can lead to transmigration of urinary solutes across the mucosal surface, affecting nerves and muscles, potentially leading to pain.  
In addition to the above, 5–10% of patients with IC are found to have Hunner’s ulcers, also called Hunner’s lesions, which are distinctive areas of inflammation of the bladder wall and are characteristic of classic IC (Interstitial Cystitis Association, 2015). Often, patients with this form of IC have more severe symptoms than patients with non-ulcerative IC (Interstitial Cystitis Association, 2015). The non-ulcerative type of interstitial cystitis is characterised by similar clinical symptoms, but Hunner’s ulcers are not evident when the bladder is examined. However, in the non-ulcerative type, glomerulations (submucosal haemorrhages) will be seen in the bladder wall when the patient undergoes investigation (Rovner, 2020).  

RISK FACTORS  


The exact cause of IC remains unclear. However, research has identified several possible triggers which may lead to the onset of symptoms (Table 2).  


Table 2: Suggested risk factors for interstitial cystitis (Interstitial Cystitis Association, 2022) 


Table 4: Conditions to be considered as a differential diagnosis in IC (French and Bhambore, 2011; Rovner, 2020) 

DIAGNOSIS  


There is no universally accepted clinical criteria for the diagnosis of IC and the disease is therefore a diagnosis of exclusion (GP Notebook, 2022). A thorough history is essential and should include information relating to onset of symptoms, duration, associated nocturia, urgency and frequency and pain. In addition, information about past history of urine infections, pelvic surgery, central nervous system, or autoimmune diseases should be obtained (Moutzouris and Falagas, 2009). Physical examination often does not normally reveal any abnormalities specific to IC. Table 3 gives a guide to suspecting IC when taking the history, and Table 4 suggests some conditions which can be considered as a possible cause for the patient’s symptoms. 


Table 3: Tips to help diagnose IC/BPS (Mishra, 2015) 

Red Flags 

  • There is no universally accepted criteria for diagnosis  
  • No specific tests are currently available to confirm the diagnosis  
  • Multiple investigations may be undertaken and may be useful in eliminating a differential diagnosis 
  • Cystoscopy will confirm the presence or absence of Hunner’s ulcers and glomerulations and will also confirm or exclude bladder cancer as a cause for the patient’s symptoms. 

Further investigations  


Following initial assessment and history-taking, with the exception of urinalysis, all other investigations are done in the secondary care setting, following referral to a urologist. These include:  
  • Urinalysis: a urine dipstick if abnormal will identify the need for further testing and if findings suggest urinary tract infection (UTI) a sample should be sent to the laboratory for culture and sensitivity 
  • Cystoscopy: done under general anaesthetic, this will confirm the presence or absence of Hunner’s ulcers and glomerulations and will also confirm or exclude bladder cancer as a cause for the patient’s symptoms. Cystoscopy is useful for excluding bladder cancer, swelling or redness and is sometimes combined with hydrodistension (filling the bladder with water) to evaluate bladder capacity. Maximal bladder capacity in healthy adults is approximately about 1,150mL, small bladder capacity occurs in severe IC but may be close to normal in patients with mild to moderate symptoms (French and Bambore, 2011)  
  • Ultrasound scan, magnetic resonance imaging (MRI)/ computed tomography (CT) scanning: there is a lack of proven imaging tools to assist in differentiation of IC/BPS from other urinary disorders and there is therefore no specific imaging test for the diagnosis of IC (Tyagi et al, 2018). Unless indicated to help exclude alternative diagnoses, radiographic studies have only a limited role in the evaluation of IC, but imaging, including MRI, CT scanning, and pelvic ultrasonography, may be performed if needed to help confirm or exclude a differential diagnosis, such as a suspected pelvic mass that is causing compression of the bladder or for an adjacent inflammatory process (e.g. diverticulitis) (Rovner, 2020).  

TREATMENT AND MANAGEMENT  


There is no cure for interstitial cystitis and there is no one specific treatment which will be effective for everyone (NIDDK, 2017). Treatment therefore aims to tackle and alleviate pain and inflammation (Harvard Medical School, 2023), and may need a combination of non-pharmacological and pharmacological options to achieve an effect. Patients may also need to try more than one treatment, either singly or in combination, before finding something which suits them (NHS, 2022).  
 

First-line treatment  


In common with the management of a number of diseases, conservative management is often used as the first option. This includes education, behavioural modification, and stress management, and training relating to normal bladder function as well as amendment to behaviours leading to increased bladder pain, all of which are considered integral to symptom control (Colaco and Evans, 2015).  

The following may be offered initially (Tirlapur et al, 2016; Urology Foundation, 2022):  
  • Dietary changes: avoidance of caffeine, alcohol, acidic foods and drinks may help. Patients may find it useful to keep a food diary to help them determine which foods, if any, may be worsening their symptoms  
  • Stress management and adopting techniques to reduce stress levels may be useful and regular exercise is also recommended. Learning basic relaxation techniques, such as meditation and massage, may be helpful in relieving stress (International Cystitis Association, 2015)  
  • Bladder retraining aims to ‘retrain’ the bladder so that the constant need to urinate is controlled. Patients use exercises and relaxation techniques and follow a schedule to urinate only at specific times. The time between urinating is gradually lengthened as bladder muscles strengthen  
  • Transcutaneous electrical nerve stimulation (TENS) uses skin pads to send electric impulses to the body with the aim of strengthening pelvic muscles, increasing blood flow to the bladder and aiding the release of hormones to block pain.  
If the above options do not achieve sufficient relief, oral medication is the next step and includes (Willacy, 2021; Mayo Clinic, 2022):  
  • Standard pain killers: over-the-counter (OTC) medications such as ibuprofen and paracetamol may be helpful for some patients, or in more severe cases, gabapentin or pregabalin may be needed to relieve pain. Amitriptyline may be prescribed to relax the bladder and reduce pain. One study reported 63% of participants experienced improvement after four months’ use, compared to 4% in the placebo group. However, benefits were outweighed by adverse effects, with 79% experiencing nausea, drowsiness, weight gain and sedation (Colaco and Evans, 2015). Stronger pain relief, such as gabapentin or pregabalin, may be needed by some patients  
  • Antihistamines: loratadine or alternative antihistamines may reduce urinary urgency and frequency and provide relief from other symptoms (Mayo Clinic, 2022)  
  • Alternative drug options: tolterodine, solifenacin or mirabegron may be prescribed to effectively relax bladder muscles. Pentosan polysulfate sodium is recommended by the National Institute for Health and Care Excellence (NICE, 2019) as an option for patients experiencing moderate to severe pain with frequency of micturition and urgency and is given in a hospital setting. However, it is only given in the following circumstances: (Willacy, 2021):  
    ○ Symptoms have failed to respond to an adequate trial of the standard oral treatments above  
    ○ The treatment cannot be given in combination with bladder instillations  
    ○ Any previous use of bladder instillations was not terminated because of lack of response.   
Bladder instillations involve insertion of drugs directly into the bladder and may be offered for those who have failed to respond to any of the other available options. However, as with other treatments, the evidence is not conclusive for their use, and they may therefore be ineffective (NHS, 2022).  

Examples of drugs used include (NHS, 2022):  
  • Hyaluronic acid or chondroitin sulfate which are thought to restore and strengthen the lining of the bladder 
  • Lignocaine which acts as an anaesthetic to numb the bladder  
  • Antibiotics may be given singly or in combination with a steroid preparation or an anaesthetic with the aim of reducing or treating infection and minimising inflammation.  

Red Flags 

  • There is no cure and no one treatment will be beneficial for all affected  
  • Non-pharmacological and pharmacological options may be used  
  • Patients may need to try several treatments, singly or in combination, before they find something which gives relief  
  • Even when symptoms settle flare ups may occur. 

SURGERY  


Bladder surgery is generally a last resort (Interstitial Cystitis Association, 2015), and the following may be suggested when all else has failed:  
  • Laser surgery or partial removal of the bladder (cystectomy) used to treat Hunner’s ulcers  
  • Cystoscopy with hydrodistension: this involves filling the bladder with water during cystoscopy. The procedure has been shown to be relatively safe with low rates of adverse effects and for reasons unknown can relieve pain up to six months (Colaco and Evans, 2015)  
  • Sacral nerve stimulation: this involves stimulation of the pelvic and pudendal nerves, initially by an external stimulator later exchanged for a permanent implant if results are successful. Although positive outcomes have been reported in some studies, they have not been reported in others (Rovner, 2020)  
  • Cystectomy: the ureters are rerouted to form a stoma on the abdomen where urine is collected into a bag, however the procedure does not guarantee complete resolution and some patients will continue to have symptoms (Urology Foundation, 2022).  

COMPLICATIONS  


Symptoms of IC such as urgency, frequency, and pain may interfere with social activities, work, and other activities of daily life, leading to reduced quality of life (Mayo Foundation for Medical Education and Research, 2022). Both males and females with pelvic pain may have pain during intercourse, affecting relationships with partners and leading to avoidance of intimacy (NIDDK, 2017). Poor sleep due to nocturia may be a problem and those living with IC may develop depression and anxiety as they struggle to cope with their symptoms (Mayo Foundation for Medical Education and Research, 2022).  
 

PROGNOSIS  


Unfortunately in many cases, IC responds poorly to treatment (DeCaria, 2020) and, to date, no treatment has been found which can successfully prevent or decrease disease progression. Due to there being no cure, patients may need to try several treatments, often in combination, before some relief is felt. Patients should be advised that they may need to persevere as it may be months before they feel things are improving, and even when things settle patients may experience intermittent flare ups (Willacy, 2021). Unfortunately, even with successful treatment, ICS may not be completely cured and there is a risk of recurrence (Willacy, 2021).  

CONCLUSION  


IC is clearly a complex, highly challenging condition which currently has no cure. It is associated with variable symptoms, making diagnosis difficult because of its similarity with numerous other conditions. The delay in diagnosis makes the disease highly distressing for those affected to cope with and hence the condition impacts on daily living activities and quality of life. This article hopes to give nurses and non-medical prescribers a greater awareness of signs and symptoms, with the aim of increasing their confidence in recognising its unpleasant effects, so that they can get those affected earlier investigations and treatment, which will ultimately impact on their ability to cope with this condition and improve quality of life. 

Key points 

  • ● Interstitial cystitis (IC) is a disease which, despite years of research, remains poorly understood 
  • ● Prevalence rates have increased in recent years, which has been attributed to improved understanding of the disease and more selective diagnostic criteria 
  • ● The condition remains difficult to diagnose and, as a result, many of those affected suffer for years before the cause of their symptoms is confirmed 
  • ● Treatment therefore aims to tackle and alleviate symptoms of concern to the patient, and may need a combination of non-pharmacological and pharmacological options to achieve an effect 
  • ● Symptoms of IC, such as urgency, frequency, and pain, may lead to avoidance of social interaction, which in turn impacts on mental health and reduces quality of life 
  • ● Unfortunately, even with successful treatment, ICS may not be completely cured and there is a risk of recurrence. 
Margaret Perry is an advanced nurse practitioner.  
This piece was first published in the Journal of Community Nursing. To cite this article use: Perry M (2023) Interstitial cystitis: facilitating earlier diagnosis and treatment. J Community Nurs 37(1): 20–21  

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