Interstitial Cystitis Treatment and Painful Bladder Syndrome
What is Interstitial Cystitis?
It means the wall of your bladder has become inflamed, causing pain (which can be severe) and needing to go to the toilet very often and urgently. Both terms – interstitial cystitis and painful bladder syndrome – are used to describe this condition and the associated symptoms. Patients can respond to treatment very well, but this is a serious condition which can lead to long term problems if left untreated.
How does it feel?
Patients describe pain in the bladder and pelvic area. Pain can be severe and worse at certain times, such as when the bladder fills or, for women, at the time of menstruation. Others report constant, low-level pain. Those affected also have urinary urgency and frequency. This means you need to go to the toilet often – for some this can be as much as 40-60 times a day. There is often great urgency; an overwhelming need to go to the toilet and this has a debilitating impact upon quality of life.
In addition to bladder pressure and pain, common symptoms of Interstitial Cystitis include pain in the lower tummy and lower back. Women often experience pain in the vulva and vagina, whilst men often report feeling a sharp pain in the scrotum, penis, and testicles. Men and women often report experiencing pain during sexual congress and excessive urination.
If you have experienced any of these symptoms, we advise you to seek medical attention.
When to Seek Medical Attention for Interstitial Cystitis and Painful Bladder Syndrome
Left untreated, Interstitial Cystitis can have a long-term impact on your quality of life so it’s important to seek medical attention if you are concerned or experiencing symptoms. A specialist will be able to advise you of the best treatment for you, in particular if you have been suffering with symptoms over time and have been unable to find an effective solution.
How is Interstitial Cystitis diagnosed?
There are some concerns about IC and painful bladder syndrome being misdiagnosed. Sometimes patients end up seeing several clinicians and there are different theories about what is wrong before the diagnosis is made. It is important to have the right diagnosis as soon as possible, so that effective treatment can commence.
Diagnosis is based upon assessing your symptoms and ruling out other conditions which could be causing those symptoms. We find this definition of IC/painful bladder syndrome is helpful:
A diagnosis of bladder pain syndrome (BPS) is made on the basis of the symptom of chronic pain related to the urinary bladder accompanied by at least one other urinary symptom such as daytime and nighttime frequency, AND exclusion of confusable diseases as the cause of the symptoms, AND cystoscopy with hydrodistension and biopsy if indicated (to document the type of BPS/IC).
European Society for the Study of IC/BPS
What are the causes of Interstitial Cystitis?
The causes are not entirely clear. One theory is that IC is an autoimmune response following a bladder infection. The infection and the body’s response to the infection result in damage to the lining of the bladder, allowing urinary toxins to infiltrate the bladder wall and set up an inflammatory reaction. Damaged nerve endings become sensitised, and the pain can become centralised and continues to be perpetuated at higher levels independent of the bladder or other pelvic organs.
Treatment of Painful bladder syndrome and Interstitial Cystitis
Fortunately, there are very effective treatments for most patients with PBS and IC. We have a wide range of good approaches available, which means if your condition is mild and this is the first time you have sought treatment, we can help you in a non-invasive way. Equally, we have extensive experience in helping women who have been struggling for some time with IC, have tried some strategies but these have not been successful.
The majority of PBS and IC symptoms can be controlled with oral medication. Medications include anti-inflammatories, anti-cholinergics and anti-histamines. For patients with more severe symptoms anti-depressants and anti-epileptic drugs can be used to dampen the nerve responses.
Bladder distension or stretching is used for diagnosis and therapy of interstitial cystitis. Under a general anaesthetic, surgeons fill the bladder with fluid and keep it stretched for two minutes. Reduced bladder capacity, redness, inflammation and bleeding are suggestive of IC. A biopsy is often taken to look for mast cells in the bladder wall. These cells produce histamine, and an increased number is also suggestive of IC diagnosis.
Bladder distension is often therapeutic. Many people find there is an improvement after the procedure. Researchers are not sure why distension helps, but some believe it may increase capacity and interfere with pain signals transmitted by nerves in the bladder. Symptoms may temporarily worsen 24 to 48 hours after distension, but should return to normal levels or improve within 2 to 4 weeks. About 30 per cent of patients report an improvement.
During a bladder instillation, the bladder is filled with a solution that is held for varying periods of time, from a few seconds to 15 minutes, before being drained through a narrow tube called a catheter. Instillations are usually repeated on a weekly cycle for 6 weeks and repeated as needed, depending on symptoms. BPC is a specialist urology clinic and our bladder specialist, Mohammed Belal works at a tertiary referral centre, seeing patients from across the region and beyond with the most complex problems. This means that if you have had a bladder installation for IC which has not work, we are able to offer a more specialist instillation, specifically developed for people with the more complex and difficult to treat forms of IC.
For patients with severe symptoms, Botox injections into the bladder have given relief in approximately one-third of patients. Botox paralyses the nerve endings, which supply sensation (as well as stimulation) to the bladder. Injections are performed under a short general anaesthetic, and their effects last between 6 and 9 months. There is a 20 per cent risk that patients will have to catheterise to empty the bladder until the Botox wears off. As such, Botox therapy is only suitable for some patients.
Electrical Nerve Stimulation
The most recent development in electrical stimulation is implantation of sacral nerve stimulator (SNS). In this technique, the nerves to the bladder are directly stimulated through the sacrum in the lower back. An external test implant is worn for 3 weeks. Our consultant, Mohammed Belal is the West Midlands regional lead doctor in the use of and training in sacral neuromodulation.
Fulguration and resection of ulcers
Fulguration involves burning bladder (Hunner’s) ulcers with electricity or a laser. When the area heals, the dead tissue and the ulcer fall off, leaving new, healthy tissue behind. Resection involves cutting around and removing the ulcers. Both treatments are done under anesthesia and use special instruments inserted into the bladder through a cystoscope.
Bladder substitution/urinary diversion
Only considered if other treatments have failed, this is a surgical approach to either remove the bladder or divert the urine. The inflamed sections of the patient’s bladder are removed, leaving only the base of the bladder and healthy tissue. A piece of the patient’s small bowel is then removed, reshaped, and attached to what remains of the bladder. Sometimes, we can leave the bladder in place and divert the urine to the stoma.