Painful bladder syndrome: how to know when your cystitis could be chronic

Interstitial cystitis (IC) is a chronic bladder condition that affects millions around the world. It is characterised by pelvic pain and sudden urges to urinate.

There are two main subtypes of IC. 90% of people with IC will have the non-ulcerative type. This means there are glomerulations (bladder hemorrhages) in the bladder wall. However, these are not specific to IC and can be caused by other types of inflammation. The other 5-10% will experience the ulcerative form of IC, meaning they have Hunner’s ulcers or patches. These are red, bleeding areas sometimes known as craters on the bladder wall that often result in more severe IC symptoms.

IC is also linked to several other conditions. The three most common associated conditions are irritable bowel syndrome (IBS), sensitive skin and allergies. However, there is overlap between a number of other conditions such as migraines, incontinence issues, asthma, endometriosis, fibromyalgia, lupus and chronic fatigue.

The exact cause of IC is not known. However, researchers Trusted source ScienceDirect Peer-reviewed Journals Multidisciplinary Research Go to source have identified several factors that may contribute to the development of the condition such as:

• bladder trauma from surgery
• bladder overdistension - long periods of not urinating
• pelvic floor muscle dysfunction - muscles that control your peeing
• an autoimmune disorder where your immune system mistakenly attacks your bladder
• hypersensitivity or inflammation of pelvic nerves

It is thought that these factors all cause damage to the bladder wall, which then allows particles in the urine to leak into the bladder lining. Once these particles get into the bladder lining, this provokes a variety of responses that could further damage the bladder as well as the nerves and muscles surrounding it.

Other researchers suggest that the bladder lining of those with IC does not repair in the same way as those who do not have IC. This is because some research Trusted source Springer Peer-reviewed Journals Multidisciplinary Research Go to source has found that a protein called antiproliferative factor (APF) is produced by cells in those who have the condition, but not in those who do not have it. It was found that APF may prevent the growth of bladder cells, meaning the bladder cannot repair itself.

What's the difference between interstitial cystitis and cystitis?

Although both IC and regular cystitis present similar symptoms, they have different causes. Cystitis is a type of UTI (urinary tract infection) caused by a bladder infection. This is caused by usually harmless bacteria entering through the urethra and infecting the bladder, causing discomfort. Cystitis is an acute condition that can often go away itself but can be treated with antibiotics, although people can experience recurrent bouts. IC, on the other hand, has no clear etiology and is a chronic condition that cannot be cured.

Symptoms and their severity vary from person to person. However, the core symptoms of IC include:

• frequent urination, often having to get up in the night (nocturia)
• feeling the sensation of having to urinate immediately, a sensation accompanied by pain, pressure or spasms
• pain that can occur in the pelvis, lower abdomen, urethral or vaginal area and the testicular, scrotal or perineal areas in men

Symptoms can go through phases and can occasionally worsen for a short period of time, otherwise known as a ‘flare up’. This could be triggered by several environmental factors. Diet, certain medicines, exercise, sexual intercourse, hormone fluctuations, stress and even tight clothing can all trigger your IC.

Diagnosing IC can be difficult as it can be confused for several other medical conditions including overactive bladder (OAB), bacterial cystitis or chronic UTI. This is why the diagnosis process for IC predominantly involves the elimination of other conditions.

Your GP will conduct a physical examination, usually involving a pelvic examination to check for any abnormalities and to see if there is another cause for pelvic pain. You may need some additional tests done such as blood or urine tests. If you have other complications such as endometriosis or gastrointestinal conditions, you may require additional diagnostic tests. In that case, your GP will refer you to a specialist at a urology clinic. A urologist will conduct more specialised diagnostic tests.

Cystoscopy with Hydrodistension

One of the tests they may perform is cystoscopy. This is a procedure to look inside the bladder using a thin camera called a cystoscope, which is inserted into the urethra. The cystoscope may be fitted with instruments for obtaining biopsies of your bladder wall. Whilst biopsies aren’t necessary for diagnosing IC, it can be useful in eliminating bladder cancer as a cause. This procedure may be performed alongside bladder distension, where the bladder is stretched by filling it with water (hydrodistension). The surgeon will let the fluid out and then re-inspect the bladder, it allows a specialist to examine your bladder capacity under anesthesia. It’s an uncomfortable but simple procedure. You will normally be discharged the same day.

Urodynamics Test

You may need a urodynamics test to find out how well the bladder, sphincters (muscles around the neck of your bladder) and urethra hold and release urine. This involves inserting two catheters into your bladder. One catheter will be connected to a sterile water machine, and the other connected to a pressure monitor which measures how much liquid your bladder can hold. Another catheter will be inserted into the vagina or the rectum in men to measure the pressure that the rest of your body is putting on your bladder. It’s not a painful procedure, but may be slightly uncomfortable.

Unfortunately there is no cure for IC. However, there is a combination of treatment options available to improve your quality of life.

Medications

There are some over-the-counter painkillers (ibuprofen and paracetamol) and antihistamines (loratadine or cetirizine) that your doctor may recommend for relieving some of your symptoms. However, there are also prescription medications available including which your doctor will prescribe based on your symptoms and their severity:

• stronger painkillers such as amitriptyline, gabapentin and pregabalin
• medications to relax the bladder muscles such as tolterodine, solifenacin or mirabegron
• cimetidine - a medication that blocks histamine (a chemical that defends against allergens) on cells in the bladder
• pentosan polysulfate sodium (Elmiron) - a medication that may help to repair the bladder lining

As well as oral medications, there are also medications that are passed directly into your bladder known as bladder instillations or intravesical medications. This includes medicines such as:

• lignocaine - a local anesthetic that numbs the bladder
• medicines that restore the bladder lining such as hyaluronic acid or chondroitin sulphate

Surgeries

If prescription medications don’t help or you have abnormal areas (lesions) in your bladder such as Hunner’s ulcers, you may require procedures to help alleviate symptoms. Procedures include:

• cauterisation - ulcers in the bladder are sealed using an electrical current botulinum toxin injections (such as Botox) - are injected directly into the bladder to temporarily relieve symptoms
• neuromodulation - an implant is placed in your body that stimulates your nerves with electricity to relieve pain and sudden urges to pee
• augmentation - making the bladder larger using part of your small intestine and includes involve removing inflamed areas of the bladder
• cystectomy (rare) - involves removing the bladder completely and creating an alternative way to pee, either through a small hole in your stomach (stoma) or through bladder reconstruction.

Supportive treatments

Combined with medications, some forms of therapy may help you. You may be recommended physiotherapy to massage your pelvic floor muscles to help with any strain on your bladder or psychological therapy to help you cope with the condition and how it impacts you.

Another alternative treatment is transcutaneous electrical nerve stimulation (TENS). This is a small battery-operated device that sends electrical impulses through your body, often used for conditions that cause chronic pain. Research is ongoing on their effectiveness, and it’s a good idea to speak to your doctor before purchasing one.

Knowing what triggers your IC symptoms is and planning for them is the key to managing the condition. There are also some minor core lifestyle changes that can improve your IC symptoms and reduce the chance of flare ups.

• avoiding certain foods and drinks such as spicy foods, acidic foods caffeinated drinks, citrus juices and anything with artificial sweeteners
• quitting smoking - chemicals in cigarette smoke can irritate your bladder
• reducing stress - breathing techniques, meditation, exercise and long baths are all ways to manage your stress
• planning regular bathroom breaks - this means your bladder is never too full, and you can retrain your bladder so you can pee less

Resources and support

If you have recently been diagnosed with interstitial cystitis, you don’t have to manage this alone. Check out Bladder Health UK and the ICA (Interstitial Cystitis Association) websites for more online communities and support with managing your IC.