What is interstitial cystitis? Ask an expert!

Written in association with: Miss Jean McDonald
Published: | Updated: 16/01/2019
Edited by: Cal Murphy

What does it mean if it hurts or burns when you pee? Do you need to go to the toilet more often than usual? Leading female urologist Miss Jean McDonald is here to explain interstitial cystitis (IC) and how it differs from a urinary tract infection.

What is interstitial cystitis (IC)?

Interstitial cystitis is a condition where there is pain in the lower abdomen and problems passing urine. It can occur in any age group but is more common in younger people. It is also called bladder pain syndrome, and it can affect one's quality of life and their well-being.

 

How does IC differ from a urinary tract infection (UTI)?

When one has a urinary tract infection, there's usually a bacterial organism involved. When urine is sent to the lab and it's cultured, a bacterial infection will be found, which is treated with an antibiotic. With interstitial cystitis, patients go to their general practitioner with the symptoms of a urinary tract infection, but when the GP sends urine to the lab, the result comes back as negative for an infection. When this occurs a few times, the patient is sent to a urologist, and then a diagnosis of interstitial cystitis can be made.

 

What are the symptoms?

The symptoms of interstitial cystitis vary. These symptoms may be present all the time or may go in phases.

  • Usually, there's a strong urge to pass urine.
  • Burning when one passes urine and intense pain at times
  • Nocturia (getting up at night to pass urine)
  • Frequently passing urine during the day

These symptoms are worse usually with periods. However, they go in phases, and at times, one will find that the symptoms are not as bad as other times.

 

Are some people more prone to IC than others?

The pathology of interstitial cystitis is complex, and therefore, there have been some associations with other diseases like lupus, fibromyalgia, and irritable bowel syndrome. However, it's very difficult to say that just one type of person is more prone to interstitial cystitis. It's a very complex disease and there has been lots of research trying to find out the answers to these questions.

 

How is IC treated?

Unfortunately, there is no cure for interstitial cystitis, but there are a lot of treatments that can be tried. No one treatment works for everyone, but there are combinations of treatments that can be used.

Lifestyle changes can help. These include making sure one has an adequate fluid intake, stopping smoking, making sure that when one goes to the toilet they empty completely, and trying to reduce stress, as stress plays a very important part in exacerbating episodes of interstitial cystitis.

There are various medications that one can use. Patients are usually complaining of pain and various analgesics can be used to try and relieve this. In addition, if one has increased frequency, passing urine quite a lot, there are various medications that can be given to slow down the bladder so that the patient is not passing urine as much. There are other treatments that can be given, like administering bladder medications to ease soreness. These preparations are hyaluronic acid or chondroitin sulphate, which is instilled into the bladder over a period of time, and these preparations relieve the pain which is usually the hallmark of interstitial cystitis.

There are other supportive measures that may help, for example, bladder retraining, pelvic floor exercises, and also posterior tibial nerve stimulation to try and reduce the urgency that these patients have. Some of these treatments can reduce the amount of times that one is going to the toilet to pass urine.

Patients can also have surgery. This initially involves looking inside the bladder and hydrodistension, which is filling the bladder with water or saline. This breaks down ulcers in the bladder so that a new layer without ulcers can form, and therefore one finds that the bladder is much less painful. I spoke about neuromodulation with posterior tibial nerve stimulation, but in some cases the bladder becomes quite shrunken and patients may need to have the bladder removed. That is a cystectomy. This of course only happens in extreme cases.

By Miss Jean McDonald
Urology

Miss Jean McDonald is an esteemed urologist, with 23 years’ experience as senior urologist at North Middlesex University Hospital. From her practice at Harley Street, Miss McDonald can consult on a range of conditions including female urology, bladder infections, kidney stones, urinary incontinence, and general urology.

After initially graduating from the University of the West Indies, Miss McDonald spent a further nine years in the Bahamas in a range of surgical roles, before moving to London in 1982. She became a fellow of the Royal College of Surgeons of Edinburgh that year and subsequently pursued specialist training in general surgery and urology, gaining her Diploma in Urology at the Institute of Urology (UCL London) in 1990. Miss McDonald was appointed consultant urologist at North Middlesex University Hospital in 1995. She has served in many capacities at North Middlesex University Hospitals, including Clinical Lead, Deputy Chair of the Medicines Management Committee, and Surgical Tutor. She has established a number of innovative programmes including nurse-led urodynamics, prostate clinic, erectile dysfunction clinic, and nurse-led cystoscopy unit. 

Miss McDonald regularly travels to Sub-Saharan Africa, Asia, the Middle East, and the Carribbean to run workshops and to share her urological expertise and be involved in the training of the young urologists in these countries. She is actively involved in the teaching of surgical trainees in the UK, as Surgical Tutor at North Middlesex University Hospital as well as Educational and Clinical Supervisor. Miss McDonald has been a member of the Board of Directors and also a member of the Nominations Committee of the Societe Internationale D´Urologie, and is a Honorary Consultant to St Luke's Healthcare, looking after the Church of England clergy.

Miss McDonald has been awarded the Gold Medal by the British Association of Urological Surgeons (BAUS) for 2024, and is the first woman to receive this prestigious title.  

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