Bladder conditions can be debilitating and you might feel isolated and like you are the only one suffering, but it’s important to remember you are not. It is estimated that 14 million¹ people in the UK are living with bladder problems , so you are not alone and there is a wealth of information and support available.
A chronic bladder condition characterised by mild discomfort, pressure, tenderness or intense pain in your bladder and pelvic area. These symptoms often persist for many weeks.
It usually affects women in their 40s and is thought to occur in 1 in 50 women².
The symptoms usually come and go, with some flare-ups lasting days, weeks or months.
To date, the cause of interstitial cystitis/painful bladder syndrome is unknown. Some theories regarding its cause include:
• A defect in your bladder tissue, which may allow irritating substances in the urine to pass through your bladder.
• Something in the urine that damages your bladder.
• Changes in the nerves that carry bladder sensations, so pain is caused by events that are not normally painful (such as your bladder filling with urine).
• A type of allergic reaction
Diagnosis can take time as the symptoms are similar to other bladder conditions such as an overactive bladder, bacterial cystitis or chronic UTI. Diagnostic tests such as urodynamics or cystoscopy might be used. Unlike more common forms of cystitis, IC is not caused by bacterial infection and therefore does not respond to antibiotic treatment.
As the exact cause of IC is unknown, there is no cure. Some treatment options are available however, that can reduce the severity of the symptoms you may be experiencing and lower the impact that IC has on your quality of life. These options range from taking oral medications to reduce the individual symptoms, to having a product instilled into your bladder (eg. iAluRil) in an attempt to re-build the waterproof protective lining of your bladder. By discussing your condition with your Doctor, Nurse or Urologist you will be able to evaluate each option and determine which treatment will work best for you.
Because of the frequent and urgent need to urinate, many IC/BPS patients’ lives revolve around planning where the nearest toilet is. This can also cause sleep deprivation. The lack of any obvious physical disability results in some patients feeling socially isolated and misunderstood, which can lead to depression.
An inflammation of the bladder caused by bacteria entering through the urethra (the tube which connects the bladder to outside of the body).
Women are most commonly affected and it is estimated up to 50% of women will get a UTI in their life³. It is less common in men where it can be related to abnormalities of the urinary tract. Incidence increases with age in both sexes.
UTIs that are not successfully identified and treated can lead to more serious problems such as kidney damage and renal failure.
There are several factors that can increase the risk of UTI in adults, including :
• Conditions that block the urinary tract – such as kidney stones
• Conditions that make it difficult to fully empty the bladder – such as an enlarged prostate gland in men
• Urinary catheters (a tube in your bladder used to drain urine)
• Having a weakened immune system – for example, from type 2 diabetes, chemotherapy or HIV
A urine sample will be analysed for bacterial infection. Antibiotics are the standard treatment in the UK but some patients will still continue to experience UTIs. GAG (glycosaminoglycan) replacement therapy (e.g. iAluRil) helps re-build the GAG layer that lines your bladder and in turn, may reduce the risk of reinfection.
The pain experienced in UTIs can be severe and can result in cancelled plans and not being able to work. In cases of rUTIs this can happen often. They can be very painful and uncomfortable.
It is easy to see how suffering from a bladder condition can take over your life, but, remember you are not alone and there is plenty of support to help you.
Use our nurse-led training videos to help you perform intermittent self-catheterisation safely, or to effectively use the iAluadapter for catheter free administration of your iAluRil.
Self-administration video for women
Self-administration video for men
Most people suffering from BPS/IC can feel isolated and alone, especially when the people surrounding them don’t realise how life-changing this condition can be.
Whilst support from your friends, family and work colleagues is vital, support from fellow sufferers can really help you manage. It is important to feel connected and to share experiences of treatment and tips, so here, we are sharing some.
“…push and demand better health care if you are struggling to be listened to... no-one knows your body better than yourself.”
“Find a good urologist - someone that you can communicate well with and someone that allows you to be part of the decision-making process around your treatment.”
We would love to hear from you to share your story and any tips that you find to be invaluable.
You might be a patient who has suffered from a bladder condition for a long time, and are keen to pass on your tips and advice to help others or, you might have been recently diagnosed and feel overwhelmed and alone.
Whilst formal treatment for BPS may take the form of bladder instillations, oral medication, surgery or nerve stimulation, there are some things you can do yourself to help control the symptoms.
It is well known that diet can help in the management of BPS. Spicy food and caffeine should be avoided, as should acidic foods, as these can increase the acidity of your urine which can cause irritation. Whilst you may need to eliminate certain foods, it is still important to try and maintain a healthy, well balanced diet.
Foods to avoid: alcohol, carbonated drinks, caffeine, fruit juice, aged cheese, tomatoes, yogurt, pickles, spices, sugar and sweeteners.
Not all foods will have the same affect for BPS patients so try keeping a food diary to see which foods cause flare-ups, and try eliminating one thing at a time.
Coping with BPS can be stressful, and reducing this stress has helped some BPS sufferers manage their condition better. This can be achieved in a number of ways including meditation, breathing exercises or simply seeing friends and family or having a warm bath. Find the best way that works for you and that fits into your lifestyle and routine; that way, you’re more likely to keep it up.
Planning ahead is a big part of coping with BPS. If you’re heading out and about, check where the nearest loos will be and find a route (either on foot or in a car) which has plenty of suitable toilet stops if needed, or places just to sit and rest. Take into account any extra time this may take too. Check the menu options if you’re eating out, and if you’re seeing friends, make sure they are aware of any dietary requirements.
Keeping active is vital if you suffer from BPS and gentle exercise such as walking, tai chi, yoga and pilates can be beneficial for some BPS patients. Nowadays, there are plenty of online classes if you would prefer to be in the comfort of your own home. Yoga and pilates will also help strengthen your pelvic floor muscles which might provide some symptom relief.
GAG therapy research
Learn how research into GAG therapies is undertaken and how past and present studies help to explain the efficient, reliable nature of iAluRil and its logical use in the treatment and management of IC/BPS and rUTIs.
Ask a nurse about…
GAG replacement therapy
Nurse and Clinical Nurse Lead at Wellspect Healthcare, Bev Collins, answers questions from patients about GAG layer replacement therapy.
Survey into bladder conditions on social media: the results
Aspire Pharma carried out a survey into how bladder conditions are portrayed on social media. Read the results here and how they helped shape our Bladder Matters social media pages.
Bladder Pain Syndrome (BPS) – a partnership in care
Learn about the science behind the condition as well as understanding how important it is that doctors and nurses explain your treatment choices and make sure your opinion is asked about them.
The GAG Layer- by Maike Eylert, Consultant Urologist
Maike Eylert, Consultant Urologist at Aneurin Bevin University Health Board, explains what the glycosaminoglycan (GAG) layer is and how GAG replenishing therapy can help when it becomes damaged.
Learn about what resources are available to you, to support your self-administration of iAluRil at home. This article includes useful tips, help and guidance.
The resources below are available for your information and record keeping. Click on them to download.
NHS England: https://www.england.nhs.uk/2015/11/continence-care/ (Accessed March 2023)
Patient. Painful bladder Syndrome (interstitial cystitis) https://patient.info/health/painful-bladder-syndrome-interstitial-cystitis (accessed March 2023)
London Urology Specialists: https://www.londonurologyspecialists.co.uk/urinary-tract-infection/ (Accessed March 2023)