Bladder Pain: The Patient Perspective

Historical Perspective

Although recognised for two centuries as a mysterious, painful bladder condition, IC, also known under multiple different names, really began to be diagnosed with the advent of the workable cystoscope towards the end of the 19^th century. A bladder condition with so-called ulcers was first described in detail, as seen through the cystoscope, in 1914 by Guy Hunner, whose name was given to the Hunner ulcer (now more accurately described as lesions). During the 19^th century, non-lesion painful bladder was considered something separate from lesions or ulcers and always ­appeared in a different chapter of the old medical books, often under the heading of bladder neuralgia or cystalgia or tic douloureux.

By the early 20^th century, two changes were becoming apparent. First, the influence of Sigmund Freud and his “hysterical woman” theory probably did more harm to women with urogenital pain than anything else, and led to many being told it was “all in the mind”, and receiving no medical treatment for their symptoms, but more likely hypnosis. Sadly, vestiges of this attitude still exist today, and many female patients are still not correctly diagnosed or treated.

Second, at that time, the situation was probably not helped by the fact that the advent of the cystoscope now focused the attention of the urological surgeon on what could be seen in the bladder, and not on what could not be seen. The invisible now did not exist. Moreover, this, too, still ­lingers on.

Importance of Diagnosing the Presence of Lesions

Today, IC/BPS, or hypersensitive bladder, is currently split (with many global variations) into (i) a disease: the Hunner lesion (which is the original interstitial cystitis), and (ii) a non-lesion syndrome (the former bladder neuralgia), which may in fact ultimately prove to embrace many different conditions with similar symptoms, and even unidentified infection.

Where the patient is concerned, it is very important for any lesions to be diagnosed with cystoscopy with or without hydrodistension, since lesions generally respond well to specific treatments. The patient should not suffer longer than is strictly necessary.

However, non-lesion IC/BPS is a much bigger problem for both the patient and the clinician, and still largely consists of trial and error treatment.

Psycho-Emotional Impact

Chronic pain, discomfort, pressure or other unpleasant sensation in and around the bladder, together with urgency and frequency, can also cause sleep disturbance, depression, anxiety, and a sense of helplessness and hopelessness. It is important to realize that IC/BPS can transform a normal, cheerful person into a depressed, anxious recluse who is tired all the time, unable to cope, and additionally who feels socially stigmatised by having this embarrassing bladder problem. This impact on the patient is not only ­greatly underestimated, but also greatly misunderstood and misinterpreted.

Furthermore, some patients may have spent years going from doctor to doctor in search of a diagnosis and may have been told repeatedly that nothing can be found, with the insinuation that the symptoms are all psychological or caused by stress. This means that such a patient is going to be very nervous about seeing any new doctor, is now emotionally fragile and afraid of being yet again “rejected”. These patients have lost not only their self-confidence but also confidence in the medical profession, and feel that nobody believes them. This aspect of feeling that you are not believed is particularly frustrating and can make a patient feel quite desperate and depressed, even suicidal.

These patients consequently need a lot of empathy and understanding, as well as practical support. This can go a long way towards reassuring the patients, helping them to cope with, and to accept, their chronic bladder disorder.

Moreover, herein lies a big problem: these patients require time, and few doctors today are either willing or allowed by their hospital to spend this amount of time on an individual patient. This raises another problem that particularly affects the western world: there are increasingly too few urologists with the necessary experience to treat the wide spectrum of IC/BPS patients, or even to diagnose lesions, because the doctors who have been deeply involved in the past 20 to 30 years are now all retiring, with too few taking their place. This has the potential to become a major practical problem for the patients, who will not be able to find a doctor willing or able to treat them and who are, indeed, already experiencing this problem.

Social Impact

This bladder condition is not simply pain or discomfort in the bladder; it is also very importantly a frequent and urgent need to void. In practical terms, this has considerable social impact, since it means that patients are constantly looking for toilets, and if they think that there is a risk of not finding a toilet when they urgently need it, they stay at home. Indeed, many patients scarcely leave their home because of this. Furthermore, the impact on employment is huge, as some jobs are naturally impossible if you need to keep running to the bathroom; this has financial consequences for the whole family, and can make a patient very anxious and the family resentful.

A big dilemma in this field is that every patient is different, with widely ranging levels of bother from the different symptoms. While some patients have intense pain, others simply experience discomfort or tenderness.

Frequency, day and night, varies hugely from one patient to another, and from one day to another in the same patient. Increased night-time frequency means that some patients get scarcely any sleep, and consequently become exhausted. Both frequency and urgency can be severe, regardless of pain intensity.

Urgency

The issue of urgency has become controversial and confusing. The urgency in IC/BPS patients is completely different from that typical “sudden” urgency felt in urge incontinence, as seen in overactive bladder, and the two should not be confused.

In IC/BPS, urgency is a compelling, overwhelming need to urinate, due to either pain or some other unpleasant sensation in the bladder reaching an intolerable level, even when there are just a few drops of urine in the bladder. The build-up might be rapid; it might be slow. As with frequency, urgency can vary greatly from patient to patient, and from one day or week to the next, which makes measurement very difficult.

Symptom Exacerbation

All the symptoms of IC/BPS can greatly increase during flares, or perimenstrually in women, and with sexual activity in both men and women. Moreover, health professionals need to find ways of approaching the subject of sexual pain, since patients may feel far too embarrassed to raise it themselves.

The symptoms of IC/BPS can also be exacerbated by diet, and even by oral medication or vitamin tablets, so the patient needs to learn from experience what specifically irritates his or her bladder. To this end, a food diary, as detailed in a paper by Friedlander and colleagues (1) could be useful.

Comorbidities

Multiple comorbidities may intensify the burden on the patient and may involve the following (2):

The Multidisciplinary Team

A multidisciplinary team approach is therefore essential; urologists themselves need to be aware of signs and symptoms that may indicate the presence of specific comorbidities and the need for referral. The standardization report from the Chronic Pelvic Pain working group of the International Continence Society (ICS) provides a good background to the multidisciplinary approach (2).

Treatment is Individual

Treatment of IC/BPS is highly individual; what works for one patient does not necessarily work for another, and there is a need for greater use of phenotyping or subtyping, aimed at sorting out patients to achieve the most suitable treatment for their particular subtype. This is yet to happen.

What do patients want and need regarding treatment?

Current treatments frequently have such disabling systemic side effects that the patient is unable to function normally.

Alternative Treatments

Treatment is currently often a question of trial and error, and when treatments fail, the frustrated patient is highly likely to go looking for alternative methods. Since some of these are not entirely without risk, the urologist should encourage patients to disclose what they are experimenting with or thinking of experimenting with. It should not be forgotten that a desperate patient may believe any spurious claim by a charlatan for a so-called “cure for IC” found on the internet.

Information for the Clinician

Guidelines for the management of IC/BPS and other chronic pelvic pain syndromes are designed to inform the clinician. However, the European Association of Urologists (EAU) guideline (3) is 68 pages long, which no general urologist is going to wade through for 1 or 2 patients. The EAU pocket guideline, on the other hand, seems to be too brief for such a complex bladder disease. Something basic and practical, specifically on IC/BPS, available online, would be a lot more convenient for the clinician and, of course, primary-care providers, so often neglected.

Information for the Patient

When it comes to information for the patient, clinicians themselves should ideally have fact sheets available that outline diagnostic investigations and treatment, why a treatment is prescribed, how it works, and include step-by-step information about intravesical treatment methods, plus the practical aspects of how to cope with any discomfort afterwards. This will save the patient much distress and go a long way towards making the situation manageable for both the clinician and the patient. Doctors must be aware of patient support groups and reliable websites in the field and be able to provide information about these.

The quote made over 60 years ago by the Canadian doctor J. P. Bourque is particularly apposite: “We have all met, at one time or another, patients who suffer chronically from their bladder; and we mean the ones who are distressed, not only periodically but constantly, having to urinate often, at all moments of the day and of the night, and suffering pains every time they void. We all know how these miserable patients are unhappy, and how those distressing bladder symptoms get finally to influence their general state of health, physically at first, and mentally after a while.” (4).

Conclusions