Interstitial Cystitis and Painful Bladder Syndrome FAQ's



Is there any genetic link with IC?

IC is poorly understood. There have been few studies that investigated any genetic or ethnic association with IC although some recent studies have reported cases where twins have had IC and a genetic component to the origin of IC could not be dismissed. Another interesting series of studies reported that there was a higher incidence of IC in patients of Jewish origin when compared to the incidence in patients of non-Jewish origin.
Mr Henry Lewi FRCS

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Does pregnancy affect IC?

I have seen a number of patients who have IC where their IC has spontaneously improved in pregnancy. There is a belief that possibly changing levels in progesterone do alter and relieve the symptoms of IC and it is possible that going onto a progesterone only [contraceptive] pill may in fact relieve the symptoms of IC in some people. I have no personal experience of using the progesterone only pill.
Mr Henry Lewi FRCS

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Many sufferers do not seem to suffer with IC alone. They often seem to have irritable bowel syndrome, vulvodynia, fibromyalgia, allergies etc. Why is this?

It is claimed that about 75% of IC patients have some kind of allergy and that 40% have IBS. Why this is I don't really know. There may be a small contribution from an allergic reaction to the overall disease make-up. The pathogenesis of most of these disorders is still a mystery.
Their fancy names hide the fact that we really don't know their cause. They could well all be part of the same disease process. However, one thing that many of these conditions have in common is the presence of mast cells in the tissues. These specialised inflammatory cells, when activated by the appropriate stimulus, release lots of granules containing many different chemicals which induce pain and inflammation.
Mr Paul Irwin MCh FRCS(Urol)

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Some people seem to suffer from different symptoms of IC. Are there different types?

There are certainly many different types of Cystitis...and the symptoms that one patient experiences may be totally different to those of another, regardless of the exact cause. The same applies to the form of Cystitis that we refer to as IC; it affects different patients in different ways. IC patients are given this diagnosis once the other causes of cystitis have been excluded. There may well be different 'types' of IC, each with a different cause or trigger, but as yet we cannot differentiate one form of IC from another.
Mr Paul Irwin MCh FRCS(Urol)

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Can anything be done to ease severe urethral burning after passing urine?

There is no universal remedy for this problem as there are different causes for it in different people. Clearly it is important to treat any urinary infection if one is found. Bladder stones can also cause it, as can infective and inflammatory conditions of the vulval area. A common cause of such inflammation is infection with the herpes virus which may respond to anti-viral medication. In the event that no obvious cause is found, empirical use of substances which neutralise acid in the urine may provide temporary relief. Occasionally a minor operation to stretch the urethra is required and is often successful.

Mr Paul Irwin MCh FRCS(Urol)

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Every month during my period I suffer from a flare up in my IC symptoms. I follow a strict IC diet, drink plenty of water and have a supportive doctor, but am at my wits end with this problem. What can I do to help myself?

Many of my patients complain that just before the onset of their period they suffer from a flare up of the IC symptoms which include frequency, urgency, urethral and suprapubic pain. Despite having good control throughout the month, they can find that for a few days preceding their period, their symptoms become a lot more severe. I am not sure as to the cause of this but suspect that it may be due to the change in levels of progesterone which occur just before the onset of the bleeding. Some patients have found that taking some form of oral therapy in the run up to their period or using analgesics or agents to reduce the frequency, such as Oxybutinin and Toltoridine, can help with this problem.

Mr Henry Lewi FRCS

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I have heard that an injection directly into the bladder base of Capsaicin can help IC sufferers. What is this and how does it work?

Capsaicin is a neurotoxin which will directly affect the C fibres which carry pain sensations to the brain and is essentially working like a local anaesthetic when instilled into the bladder. It has been found that in patients with severe bladder pain related to their interstitial cystitis, intravesical instillation of Capsaicin has resolved a lot of their pain and discomfort. However, the studies are still in the early phases and Capsaicin is not widely available. 

Mr Henry Lewi FRCS

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I am on Amitriptyline (12 years) and Elmiron® (3 months) for my IC and have put on weight over the last years. I started line dancing a year ago to help me and I thoroughly enjoy this activity. Recently however my pain got worse and so did my frequency. Do you think the line dancing could be the cause?

I am not really sure that line dancing will have worsened the symptoms. Some activity is known to precipitate the pain and discomfort and frequency in interstitial cystitis and it may be that increasing activity which increases activity of the pelvic muscles may precipitate increase in symptoms in interstitial cystitis.

Mr Henry Lewi FRCS

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Why does sexual intercourse cause such a flare up in my IC symptoms?

I suspect that sexual intercourse results in mild trauma to the base of the bladder which is unduly sensitive in patients with interstitial cystitis. It is well known that patients with IC also suffer from vulvodynia, introital pain and pain on intercourse and this is all part of the symptomatology of IC. Many patients complain of their IC symptoms becoming worse after intercourse which must in part be related to the mild trauma which occurs to the bladder base.

Mr Henry Lewi FRCS

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I have been diagnosed as suffering from cystitis glandularis. What is this and how does it affect IC sufferers ?

Cystitis glandularis is the term given to describe the appearance of the bladder lining in a certain form of bladder inflammation which is usually due to chronic urinary infection. A milder form of inflammation is termed cystitis cystica because the bladder lining breaks out in multiple tiny blisters. A slightly more severe form is called cystitis glandularis in which the "blisters" have a slightly thicker lining and in which the bladder lining itself acquires a cobblestoned appearance. There is no direct relationship between these forms of inflammation and IC as these are due mainly to infection whereas the diagnosis of IC rests on a number of clinical symptoms, signs cystoscopic and urodynamic findings. They may of course co-exist with IC.

Mr Paul Irwin MCh FRCSI(Urol)

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If they can transplant hearts, lungs, kidneys etc., why not bladders ?

Good question! The function of the bladder is simply to store urine in reasonable volumes so that it can be emptied completely at an appropriate time. If the bladder cannot perform this task it presents an inconvenience rather than a life-threatening problem, unlike heart, lung and kidney failure where organ transplantation with its associated risks and complications may be essential. Major organ transplants from other humans are always at risk of rejection and necessitate life-long drug treatment to keep the recipient's immune system under control. The bladder on the other hand is not an essential organ and surgeons can fashion good urine storage pouches and ‘bladders' out of the patient's own bowel thus avoiding the organ rejection problems associated with transplants from other humans.

Mr Paul Irwin MCh FRCSI(Urol)

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At times of anxiety (visits to the dentist, travelling) my bladder fills much more rapidly than usual, and as I normally need to void when it only holds 3oz. this causes problems. Can you suggest a remedy ? Should I be asking my GP for an anti-anxiety drug ?

It is not unusual for people to feel the need to void frequently at times of stress; I remember too well the feeling at exam time! It is therefore not unique to patients with IC, but, because IC patients have such small capacity bladders with extra-sensitive linings, stress-induced urgency becomes even more problematic and noticeable. I do not think that anti-anxiety drugs are the answer. I would recommend a programme of bladder retraining in addition to the standard medical treatments for IC (Hydroxyzine, Amitriptyline, Elmiron® etc.).

Mr Paul Irwin MCh FRCSI(Urol)

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Can the beneficial effects to an IC sufferer of taking Amitriptyline wear off over a sustained period of taking the medication (over 2 years)?

Amitriptyline is an antidepressant medication which, in low doses, is useful in relieving chronic pain conditions such as IC. About 35% of IC sufferers will obtain symptomatic relief from Amitriptyline. However, the body develops a tolerance to the drug over time in which case it may be necessary to increase the dose a little or to switch to another treatment.

Mr Paul Irwin MCh FRCSI(Urol)

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My Consultant recently suggested that I may have some form of chemical cystitis. Can you tell me any more about this? My symptoms are pain in the bladder and I am being treated with Dothiopin which together with the management of diet has greatly reduced the pain.

Chemical cystitis is similar to ‘normal bacterial’ cystitis except that it is induced. The causative agent is a chemical agent such as DMSO, cyclophosphamide (an agent used in the treatment of various cancers or auto-immune disorders), BCG and other various chemicals of drugs.

Mr Henry Lewi FRCS

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With the support of the charity I have learned to cope better with IC and take Oxybutinine when necessary. However, at night I often need hourly visits to the toilet, making me feel exhausted. What advice can you give me either for self-help or medication so that I can improve my sleep.

Oxybutinine is ineffective if taken intermittently, and will only work if taken over a prolonged period (it often takes up to 4 weeks to commence its action). I therefore suspect that if the oxybutinine is taken correctly then the need to visit the toilet frequently will be reduced.

Mr Henry Lewi FRCS

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Why is it that there are still many doctors who have not heard of IC?

IC is now well recognised as a chronic inflammatory disorder of the bladder by all Urological Surgeons and most Gynaecologists. Most GP’s have now heard of IC as a result of education and raised levels of awareness.

Mr Henry Lewi FRCS

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I have had IC for about 6 years and have found Atarax helpful in resolving symptoms. Does this mean that allergy is the cause of my IC?

I am delighted that you have hit upon something which manages to keep your IC symptoms in check. I have found Atarax (Hydroxyzine) to be a very useful drug in the treatment of IC. It is a special antihistamine which has a chemical structure similar to some antidepressant agents like Amitriptyline, which is also used to treat IC. This means that it not only blocks the effects of histamine from bladder mast cells but it also has an effect on the passage of pain messages from the bladder. While it appears to work especially well in patients who have a history of allergies the fact that it works for you does not necessarily imply that your IC is due entirely to allergy.

Mr Paul Irwin MCh FRCSI(Urol)

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I suffer from IC, and also have serious constipation. I have a severe intolerance to many chemicals and cannot take anything containing lactose, fructose etc. Do you know of anything that can help my constipation without setting off an IC flare?

There are a number of different agents you could try, all of which work in a different way. Stool softeners like paraffin, Co-danthramer or docusate (Dioctyl) are safe and effective, as are magnesium salts. Stimulant laxatives cause the bowel to contract more effectively and include senna (Sennakot), bisacodyl (Dulcolax) and syrup of figs. Regular use of bulking agents like bran fibre or Fybogel are not only safe but strongly recommended.

Mr Paul Irwin MCh FRCSI(Urol)

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How do anti-histamine drugs help Interstitial Cystitis?

At present we little understand how anti-histamine drugs work. Most specifically the anti-histamine drugs which seem to help in the condition of Interstitial Cystitis is that group of agents known as H2 receptor antagonists. These are anti-histamines which specifically inhibit the histamine stimulus brought out by stimulating a type of receptor called the H2 receptor. This is well established in gastric and duodenal ulcer disease where stimulation of the H2 receptors produces large amounts of gastric acid to be secreted into the stomach, which is one of the many reasons why people have ulcers in the stomach and the duodenum. Blocking gastric acid secretion is carried out by the use of anti-histamine drugs, most specifically H2 receptor antagonists of which Cimetidine is the best known example although another agent is Ranitidine.

It is thought that H2 receptor antagonists work by blocking stimulation of the H2 receptors; in the stomach this prevents secretion of gastric acid. However, we also think that the H2 receptors stimulate changes in blood flow, changes in the activity of the bladder muscle and may also control the sensitivity of the bladder to filling and emptying. However, this is only speculation about the mechanism by which anti-histamines may work.

Mr Henry Lewi FRCS

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Does the stomach ulcer drug Ranitidine work in the same way as Cimetidine? If so what is the difference between the two?

Ranitidine works in exactly the same way as Cimetidine. It is a newer type of H2 receptor antagonist. The only difference is that Ranitidine is only available on prescription for the treatment of IC, and not available across the counter, as is Cimetidine (Tagamet) and it is taken once a day rather than 2 or 3 times a day.

Mr Henry Lewi FRCS

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I have all the symptoms of Interstitial Cystitis, but following biopsies I have been told that I do not have IC. How accurate are biopsies in assisting the diagnosis of the condition?

The role of bladder biopsy in Interstitial Cystitis is still open to discussion. Whilst in some cases it is accepted that biopsies are useful in diagnosing IC, they are not truly diagnostic. It is noted that patients with Interstitial Cystitis often have an increased number of mast cells within the bladder itself however, it is well recognised that in a large proportion of patients, IC often does not have these classical features on the biopsy and may not show an increased amount of mast cells. The diagnosis of IC is made on a combination of symptoms exhibited by the patient and the appearances seen when a cystoscopy is carried out with the classical appearances on filling of the bladder. In addition there may be indications of IC when we carry out a Cystometrogram (which is a physiological test on the activity of the bladder) and reduction in the volume of the bladder before a patient exhibits pain. All of these features would help us to make a diagnosis of Interstitial Cystitis. Therefore bladder biopsy is certainly helpful but not definitive.

Mr Henry Lewi FRCS

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Is it okay to take either Cimetidine or Amitriptyline with Beta-blockers that I need to take for my migraines?

It is always a problem in taking and combining tablets. Whilst Cimetidine has been around for a very long time and is often used in combination with Beta-blockers, I would be hesitant about recommending Amitriptyline in combination with Beta-blockers. Amitriptyline is a sedative and Beta-blockers also have a role in slowing down the heart rate which can produce a sedative effect. I would therefore certainly be hesitant about recommending a combination of these two.

Mr Henry Lewi FRCS