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Interstitial cystitis (painful bladder syndrome) Symptoms causes and treatment

Interstitial cystitis: what is it?

The Interstitial Cystitis is a bladder disease rare but disabling that changed name. It is now called painful bladder syndrome. It is characterized by pain in the lower abdomen and frequent urges to urinate , day and night. These pains and urges to urinate are often very intense, sometimes unbearable, to the point that interstitial cystitis can be a real social handicap, preventing people from leaving their homes. Pains can also affect the urethra (the canal that leads urine from the bladder outwards) and, in women, the vagina (see diagram). Urination ( urination)partially or completely relieves these pains. Interstitial cystitis mainly affects women . It can be declared at any age from 18 years old. For now, there is no cure for this condition, which is considered chronic .

Be careful not to confuse interstitial cystitis and cystitis  : “classic” cystitis is a urinary infection caused by bacteria; interstitial cystitis is not an infection and its cause is not known.

Note. In 2002, the International Continence Society (ICS) published recommendations suggesting the use of the term ”  interstitial cystitis-painful bladder syndrome  ” rather than interstitial cystitis alone. In fact, interstitial cystitis is part of the painful bladder syndromes, but it is accompanied by special features that are visible on examination in the bladder wall.

Prevalence Interstitial cystitis

According to the Interstitial Cystitis Association of Quebec, approximately 150,000 Canadians are affected by this disease. It appears that interstitial cystitis is less common in Europe than in North America. However, it is difficult to obtain a precise estimate of the number of people affected because the disease is under-diagnosed. It is estimated that there are between 1 and 7 people with interstitial cystitis per 10,000 individuals in Europe. In the United States, this more common illness would affect one in 1,500 people.

Interstitial cystitis affects about 5 to 10 times more women than men. It is usually diagnosed around the age of 30 at age 40 and 25% of those infected are under the age of 30.

Causes Interstitial cystitis

In interstitial cystitis, the inner lining of the bladder is home to visible inflammatory abnormalities. Small wounds present on this wall of the inside of the bladder may leak a little blood and are the cause of pain and urge to empty the bladder of acidic urine.

The origin of the inflammation observed in interstitial cystitis is not known with certainty. Some people link its onset to surgery, childbirth, or severe bladder infection, but in many cases it seems to occur without triggering cause. Interstitial cystitis is probably a multifactorial disease , involving several causes.

Several hypotheses are under study. Researchers are talking about an allergic reaction, an autoimmunereaction, or a neurological problem in the bladder wall. It is not excluded that hereditary factors also contribute.
Here are the tracks most often mentioned:

  • Alteration of the bladder wall . For some unknown reason, the protective layer lining the inside of the bladder (cells and proteins) is altered in many people with interstitial cystitis. This layer normally prevents irritating substances in the urine from coming into direct contact with the bladder wall.
  • Intravesical protective layer less effective . In people with interstitial cystitis, this protective layer would act less effectively. Urine may irritate the bladder and cause inflammation and a burning sensation, such as when applying alcohol to a wound.
  • A substance called AFP or antiproliferative factor is found in the urine of people with interstitial cystitis. It may be involved because it seems to inhibit the natural and regular renewal of cells lining the inside of the bladder.
  • Autoimmune disease . Inflammation of the bladder could be due to the presence of harmful antibodies attacking the bladder wall (autoimmune reaction). Such antibodies have been found in some people with interstitial cystitis, without knowing whether they are the cause or the consequence of the disease.
  • Hypersensitivity of the nerves of the bladder . The pain experienced by people with interstitial cystitis could be “neuropathic” pain, that is to say caused by the dysfunction of the nervous system of the bladder. Thus, a tiny amount of urine would be enough to “excite” the nerves and trigger painful signals rather than just a feeling of pressure.

Evolution Interstitial cystitis

The syndrome evolves differently from one person to another. At first, the symptoms tend to appear and disappear on their own. The periods of remission can last several months. The symptoms tend to worsen with the years. In this case, the pains become worse and the urges to urinate become more frequent.

In the most severe cases, the urge to urinate can occur up to 60 times in 24 hours. Personal and social life is greatly affected. The pain is sometimes so intense that discouragement and frustration can lead some people to depression , and even suicide . Support from loved ones is crucial.

Diagnostic Interstitial cystitis

According to the Mayo Clinic in the United States, people with interstitial cystitis receive an average diagnosis four years after the onset of the disease . In France, a study conducted in 2009 showed that the diagnostic delay was even longer and corresponded to 7.5 years. This is not surprising since interstitial cystitis can easily be confused with other health problems: urinary tract infection , endometriosis , chlamydia infection , kidney disease, overactive bladder, etc. .

The diagnosis is difficult to establish and can only be confirmed once all other possible causes have been ruled out. Moreover, it is an affection still poorly known to doctors. It still happens that it is called “psychological problem” or imaginary by several doctors before the diagnosis is made, while the internal aspect of the inflammatory bladder is very speaking.

Here are the most commonly performed tests to diagnose interstitial cystitis:

  •  Urine tests. Culture and analysis of a urine sample can determine if there is a urinary tract infection. When it comes to interstitial cystitis, there is no microbe, the urine is sterile. But there may be blood in the urine (hematuria) sometimes even very little (microscopic hematuria to which caps are void red blood cells under the microscope, hands no blood to the naked eye). In caps of interstitial cystitis, one can also find white blood cells in the urine.
  • Cystoscopy with hydrodistension of the bladder . This is an examination to observe the wall of the bladder. This examination is performed under general anesthesia. The bladder is first filled with water so that the wall is distended. Then, a catheter with a camera is inserted into the urethra. The doctor inspects the mucosa by viewing it on a screen. He looks for the presence of fine cracks or small haemorrhages. Called glomeruli , these small bleeds are very characteristic of interstitial cystitis and present in 95% of cases. In some less common cases, there are even typical wounds called Hunner’s ulcers. Sometimes the doctor conducts a biopsy. The collected tissue is then observed under a microscope for further evaluation.
  • The urodynamic assessment including u cystometry and urodynamic examination can also be made. But these examinations are less and less practiced because they are not very specific and therefore not very useful and often painful. In case of interstitial cystitis, one discovers with these examinations that the volumetric capacity of the bladder is diminished and that the urge to urinate and the pains appear for a volume lower than in a person not suffering from interstitial cystitis. However, these tests allow to detect hyperactivity of the bladder (overactive bladder) another functional disease also causing urgent urges to urinate.
  • Potassium sensitivity test. Less and less practiced because it is not very specific with 25% false negatives (the test suggests that the person does not have interstitial cystitis whereas in 25% of cases it is!) And 4% false positive (the test suggests that the person has interstitial cystitis when this is not the case).

Using a catheter inserted into the urethra, the bladder is filled with water. Then, it is emptied and filled with a solution of potassium chloride. (A lidocaine gel is first applied around the urethral opening to reduce the pain caused by catheter insertion.) On a scale of 0 to 5, the person indicates the urgency that she feels to urinate and the intensity of the pain. If the symptoms are increased when the test is performed with potassium chloride solution, this may be a sign of interstitial cystitis. Normally, no difference should be felt between this solution and water.

The symptoms can occur by ”  crises  ” interspersed with periods of calm. Some people suffer from moderate pain, while others will complain of unbearable pain and urge to urinate almost permanently. In the same person, the intensity of the symptoms can also vary enormously from one week to another, or even from one day to another. Here are the main symptoms:

  • pain in the form of burning or spasms in the lower abdominal (pelvic region) and the abdominal area. The fuller the bladder, the more intense the pain . The pain can reach the lower back and upper thighs, as well as the vagina, urethra and rectum. It is constant or intermittent, and may decrease after urinating.
  • persistent urge to urinate , including right after going to the bathroom. The need to urinate is felt day and night, to evacuate a few drops of urine each time.
  • In addition to being frequent, the need to urinate is painful and urgent (the person has difficulty in restraining himself, without there being any urinary leakage). There is talk of urge incontinence or urge incontinence.
  • burning sensation when urinating
  • Pains intensified at the time of sex or just after. Sex is painful for almost half of those affected.
  • In men, tenderness or pain in the penis or scrotum.

  • The physical effort and intense emotions can exacerbate pain, like wearing tight clothes or eating certain foods (see Treatments section).
  • In women, the symptoms may worsen in the days before their menstruation .
  • About 30% of those affected do not have pain. Conversely, about 15% have only pain, without the urge to urinate.
  • Interstitial cystitis may be accompanied by urinary incontinence, but this is rare.
  • In some people, pain and inflammation are also felt in the joints, muscles or intestines.

People at risk

  • The women . From 80% to 90% of those affected are women. That said, more and more men are diagnosed with interstitial cystitis.
  • People with another disease characterized by chronic pain . Interstitial cystitis affects people with fibromyalgia, irritable bowel syndrome or vulvodynia more frequently . Thus, the irritable bowel syndrome is 30 times more common in people with interstitial cystitis than in the general population. It seems that in people with these different health problems, the neurons responsible for transmitting pain messages to the brain have increased activity. The consequence would be greater sensitivity to pain.
  • Men treated for a prostate disorder . Indeed, interstitial cystitis is more common in those who suffer from prostatitis, an inflammation of the prostate.

Risk factors

A US study of 645 women found a correlation between smoking and  interstitial cystitis. Further studies are needed to determine if smoking actually contributes to the disease.

There is still no cure for interstitial cystitis. That said, several medications and treatments can be offered to relieve symptoms. It should be noted that there is still little data on the efficacy of these treatments and that some of them are used experimentally . Since each person responds differently to the treatments, it can take several months to find the right one.

In cases where interstitial cystitis is very disabling, follow-up in a pain clinic with a medical team specializing in chronic pain may be indicated. ( For more information on the multidisciplinary approach proposed in specialized clinics, see our article Relieving Chronic Pain – Hope … )

Oral medication for pain

This is often the first relief treatment suggested by the doctor. The choice of the drug depends largely on the type of symptom that predominates.

– Analgesic medicines (anti-pain) or nonsteroidal anti-inflammatory drugs (anti-inflammatory drugs other than cortisone derivatives) can relieve pain and inflammation. They are rarely enough. It may be paracetamol (acetaminophen) or ibuprofen, naproxen or for example acetylsalicylic acid (aspirin) or even derivatives of morphine. We must look for the most effective combination of anti-pain and / or anti-inflammatory for each person.

– Antispasmodic drugs , muscle relaxants or anticonvulsants can also be used to relax the bladder as much as possible.

– Anticonvulsants such as Gabapentin , a drug used to treat chronic pain because it changes the nerve transmission of pain to the brain. This medication is usually effective, but it does not relieve pain quickly. It slightly raises the threshold beyond which pain is felt.

– Antidepressant drugs . Some antidepressants used at low doses have anti-pain properties. They act as neuromodulators of pain. Amitriptyline (Elavil) is often used and relieves pain in approximately two-thirds of people with interstitial cystitis. Serotonin reuptake inhibitor antidepressants (fluoxetine or Prozac, sertraline) may also be used, although there is less data on their use.

– Antihistamine drugs (antiallergic) such as hydroxyzine, a drug used against allergies, are sometimes used. However, few studies have confirmed its effectiveness. The effect on the symptoms would appear that after 3 months. The cimetidine , another antihistamine, appears effective in some people, according to several recent studies . It is generally offered to people with interstitial cystitis who also have allergic terrain.

– Immunosuppressive agents such as Cyclosporine A. A study has shown that the administration of low dose cyclosporine A was more effective than the administration of pentosan sodium (Elmiron) to reduce the symptoms of interstitial cystitis.

– The sodium pentosan (ELMIRON) is the only oral medication that is specifically indicated to relieve the pain caused by interstitial cystitis. It is therefore the most used. This medication will adhere to the lining of the lining of the bladder, protecting it from the irritating components of the urine. The optimal therapeutic effect appears only after 6 to 12 months of treatment. About 30% to 60% of people report a decrease in pain after 3 months of treatment. Pentosan sodium is contraindicated in pregnant women.

– Cytoprotek  : it is a dietary supplement containing quercetin, chondroitin sulfate, sodium hyaluronate, and glucosamine sulfate.

– Quercetin , a flavonoid is a pigment giving its colors to fruits or vegetables and seems to complement, improve pain.

Introduction of liquids into the bladder ( vesicalinstillations )

The doctor can introduce a sterile solution that contains one or more medications into the bladder by inserting a tube (catheter) into the urethra. These drugs then act directly on the bladder wall. Their goal is to temporarily replace the superficial layer of the inside of the bladder so that it is less irritable. Several drugs can be used. For example:
Cystistat composed of sodium hyaluronate (hyaluronic acid salt).
GepanInstill or Uracyst contains chondroitin sulfate.

The most commonly used drug is dimethyl sulfoxide (DMSO). Depending on the case, the solution should be kept in the bladder for 15 to 60 minutes and then eliminated by urinating. It is usually given weekly for 6 weeks. DMSO can be used alone or in combination with corticosteroids or heparin.

The heparin can also be used alone. It reinforces the protective layer that lines the inside of the bladder. Instillations are usually weekly, but relief is obtained less quickly than with DMSO.

Several other drugs have been tested to relieve people with interstitial cystitis. Among them, hyaluronic acid, botulinum toxin, capsaicin or CG (Bacillus Calmette-Guerin) have shown promising results. However, further studies are needed to confirm their effectiveness.

Note . Compared with taking oral medications, bladder instillation has the advantage of generating fewer side effects. In addition, it is possible to use higher doses of drugs. The insertion of the catheter into the urethra, however, is painful. The prior application of an analgesic gel of lidocaine around the orifice of the urethra makes it possible to anesthetize it to better support this type of treatment.

Food modifications

If the diet increases the degree of acidity of the urine, the pains of interstitial cystitis are increased. Also, people with interstitial cystitis notice that their pain worsens from 2 to 4 hours after eating certain foods. Thus, up to 6 people on 10 interstitial cystitis sufferers can clearly recognize harmful foodsresponsible for increased pain. In some cases, a change in diet is enough to relieve pain. From one person to another, however, it is not the same foods that exacerbate the symptoms. It is therefore advisable for everyone to recognize “harmful” foods in order to avoid them.

For this purpose, it is very useful to keep a food diary of noting the contents of the meals and the intensity of the symptoms. This process of observation and adaptation of the diet takes place over several months. The help of a dietician or a nutritionist is highly recommended.

As first lines of research, here are various trigger foods known to accentuate the symptoms in many people with interstitial cystitis.

  • All soft drinks, soda and colas.
  • Caffeine or caffeine (non-decaffeinated coffee, cola-type soft drink, tea, chocolate).
  • Alcohol (beer, white, red or rosé wine, champagne, strong alcohols).
  • Hot peppers and spicy dishes.
  • Foods and juices very acidic (several fruits, but especially citrus fruits and tomatoes).
  • Some fruits and vegetables: beans, beans, pineapple, citrus, banana, rhubarb …
  • Most nuts.
  • Meat and smoked fish, tofu.
  • Synthetic sweeteners, preservatives and food additives.
  • Vinegar (and food pickled in vinegar), mustard, soy sauce.
While cranberry juice is recommended for treating and preventing urinary tract infections(bacterial cystitis), it can worsen the symptoms of interstitial cystitis . Better to avoid consuming it.


Advice from the Interstitial Cystitis Association of Quebec

  • Focus on foods in their most natural form. Fruits and vegetables should ideally come from organic crops .
  • Well hydrate yourself . People with interstitial cystitis may have a tendency to drink little to go to the bathroom less often. This has the effect of concentrating the urine and accentuating the pain. It is desirable to drink 2 liters of water (or other) throughout the day. Good hydration also helps prevent constipation, which increases pain.
  • Use non-chlorinated water . A simple way to dechlorinate tap water is to let the water sit for a dozen hours on the counter or in the fridge before drinking. Another solution is to filter the tap water. Most water filters reduce chlorine content


The interstitial cystitis , because it causes pain and incessant desire to go to the bathroom, night enormously to the quality of life of sufferers. All areas of life can suffer, from employment to recreation through the life of a couple and family. Psychotherapy can help to ensure that physical suffering does not occupy the whole place. Psychotherapy provides significant emotional support, helps to manage pain and stress, and helps to resolve relationship difficulties, etc. Active search for strategies to alleviate symptoms is often facilitated.

Transcutaneous electrical neurostimulation (TENS)

This treatment is mostly used when symptoms predominate during the night . The transcutaneous electrical nerve stimulation is performed using an apparatus generating an electrical current of low voltage. This device is connected to electrodes affixed to the lower back, the pubis, in the rectum or in the vagina. In some people, TENS reduces pain and frequency of urination. It may do so by increasing blood flow to the bladder, strengthening the bladder muscles or causing the release of natural painkillers.

Surgical interventions

As a last resort, if the pain is very intense and no oral or intravesical treatment relieves them, surgical interventions can be proposed.

Hydrodistension of the bladder . This procedure consists, under general anesthesia, filling the bladder with physiological fluid (sterile water slightly salty) to “swell” as at the time of the diagnostic examination. This temporarily relieves symptoms in about half of people with. The beneficial effect can last several months. However, the procedure becomes less and less effective over time (we talk about addiction). 

Neurostimulation of the sacral nerve . This technique consists in stimulating the sacral nerve in a continuous way by a slight electric current. The sacral nerve, located in the lower back, controls the muscles of the bladder. Stimulating it allows some people to reduce urinary urgency and frequency of urination, and sometimes to reduce pain. If the treatment works, a case is implanted permanently under the skin, up the buttock.

Ablation of the bladder . If there is no treatment to alleviate the symptoms, a total or partial removal of the bladder can be done as a last resort. This is a heavy intervention that can only be considered in people who have previously been treated in the clinic for pain and who have not had the expected results and can no longer tolerate suffering. Ablation of the bladder is usually partial, and the surgeon then enlarges the remaining bladder by grafting a piece of intestine ( enterocystoplasty ). This intervention reduces the frequency of urination, but the pain can persist in a minority of people. In these cases, a total removal of the bladder ( cystectomy) can be considered. This procedure requires the establishment of an external pocket that collects urine ( stoma ).

Finally, Hunner’s ulcers , if present, can be treated by laser . This treatment seems to relieve the symptoms.

Some tips to relieve pain

  • Lie on your back and bend your knees against your chest.
  • Place a bag of ice or heat on the lower abdomen, depending on preference. Take a hot bath, if the heat relieves.
  • After having eaten a food or tried a dish causing symptoms, drink a glass of water in which is diluted 1 teaspoon of baking soda. Baking soda makes the urine less acidic.
    Warning. Cardiac patients with high blood pressure or other health problems that may be influenced by salt intake should consult their doctor before taking baking soda because it has a high salt content.
  • To reduce the pain during sexual intercourse, these few ways could help: before and after sexual intercourse, apply heat or cold to the pelvic area (a “magic bag” hot water bottle can do the trick) and, during sexual intercourse, use a water-soluble lubricating gel and find positions that are less painful.

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