Interstitial Cystitis (also known as bladder pain syndrome or painful bladder syndrome) is an inflammatory condition of the bladder. It is poorly understood condition that interferes with the body’s ability to urinate.
Even though there is not a lot of understanding regarding the condition, it is though that most people with the disease have a problem with a damaged bladder lining – the GAG (glycosaminoglycan) layer. When this layer becomes damaged, it is thought that urinary chemicals leak into surrounding tissues causing pain, inflammation and a variety of urinary symptoms.
The cause of Interstitial Cystitis is currently unknown, but as with most chronic health conditions, there are several proposed theories as to why this disease develops;
- Repeated urine infections cause damage to the GAG layer in the bladder
- A defect in the bladder lining and tissue that may allow irritating substances in the urine to penetrate the bladder
- Autoimmune response from mast cells (white blood cells that are part of the immune system) that release histamine, a chemical that causes an inflammatory response
- Autoimmune response from the body attacking your bladder
- Pelvic floor dysfunction causing the muscles of the pelvic floor to have a problem when urinating
Whilst there is no definite cause, there is evidence that suggests people with Interstitial Cystitis are predisposed to or have other chronic conditions, such as Endometriosis and Fibromyalgia. This might suggest that there is a link between the causes of Interstitial Cystitis and other conditions, possibly an inflammatory one.
The symptoms of Interstitial Cystitis can mask those of a urinary tract infection, however antibiotics are not effective in treating it. The symptoms include but are not limited to;
- suprapubic pain (pain located over the bladder area)
- painful urination, often described as a burning sensation
- pain on emptying the bladder, which can be relieved when the bladder is empty
- pain with a full bladder and/or when the bladder is filling
- painful sexual intercourse
- frequent need to urinate – often above 30 times a day
- frequent need to urinate at night
- urgency with urination, even if the bladder is not full
- urethral pain
- problems starting urination, or maintaining a stream or urine
- blood in urine
- worsening of symptoms on consumption of specific foods and drinks
- frequent urine infections
Some of the above symptoms mirror other conditions, such as Overactive Bladder, Pelvic Floor Dysfunction and Endometriosis, which is why it can sometimes be tricky to get a diagnosis. The disease often has “flares” where individuals will have periods of being symptoms free, commonly termed as remission, and periods of being very symptomatic.
I had quite a few of the listed symptoms since I was a child. My parents dragged me from GP to GP but for some reason it was never looked into or taken seriously. Even when I was young I developed repeated urine infections that carried on when I hit puberty and into adult life. Before my diagnosis in late 2016, I was having weekly urine infections that would often progress to kidney infections and I’d be taken to hospital.
The gold standard for diagnosing Interstitial Cystitis used to be a cystoscopy – a procedure often carried out under general anaesthetic where a thin catheter-type tube with a camera is inserted into the bladder. This can be done alongside a hydrodistension, where the bladder is stretched. However, recent evidence and research suggests that cystoscopies are not always specific for the diagnosis of Interstitial Cystitis, and are now often used after other conditions have been excluded. On examination of the bladder, it is common to see inflammation, redness and areas of glomerulations (areas of bleeding), as well as Hunners ulcers.
Other diagnostic tools include post-voiding ultrasounds (to assess how much urine remains in the bladder after voiding), flow studies and urodynamics. I personally found urodynamic studies awkward – I had to sit on the end of a bed with a pan underneath and wee into it whilst the healthcare professionals were watching the pressures I was producing. But it was essential to my diagnosis – it determined that I was retaining huge amounts of urine and I was having to physically force urine out of my bladder.
Just as Interstitial Cystitis is tricky to diagnose, it is also tricky to treat. The treatment approaches focus on a step-wise approach, utilising conservative methods before surgical ones.
Conservative methods include self care, such as diet modification (e.g. avoiding acidic food) and stress management, pain relief and oral medication to ease bladder symptoms (e.g. antihistamines). Most Interstitial Cystitis patients find they have triggers to foods, drinks and environmental factors that can trigger flares, so avoiding these is an important part of disease management. Some patients find relief through physiotherapy, using intermittent self-catheterisation or having an indwelling catheter fitted.
More invasive methods start with bladder installations, where liquids thought to repair and protect the GAG layer are inserted into the bladder via catheter. These can contain a mixture of antihistamines or even local anaesthetics. Other invasive methods include nerve stimulation, such as simple tibial stimulation or a surgical procedure where a sacral nerve stimulator is placed under the skin.
Surgical intervention starts with less complicated procedures such as hydrodistensions, where the stretching of the bladder is thought to also relieve symptoms, as well as the treatment of Hunners ulcers. More complicated procedures are urethral dilatation and Botox injections, and progress onto major operations where urine can be diverted to passing through a suprapubic catheter, the intestines can be used to make the bladder larger or the bladder removed completely.
The most effective treatment methods I have found are regular hydrodistensions – I have had about 6 in the last 3 years – and sacral nerve stimulation (SNS). I am currently due to have the permanent stage of the SNS fitted later this year, but before I even got to trial it I went through 3 different types of bladder installations (one of which I reacted to and ended up in hospital!) as well as 2 indwelling catheters.
It is worth noting that whilst there are all these treatment options for Interstitial Cystitis, not all of them are available on the NHS or at every Urology department. They also won’t work for everyone, and are often used in combination with each other to achieve the best results. The Urology department I had been under for the last couple of years had to transfer me to a hospital further away, although it was a specialist centre. They had a wider range of treatment available and had more funding for medications. They were also the centre that approved me for the SNS.
Interstitial Cystitis can have a serious impact on an a persons life, as the distressing bladder symptoms can make it hard to go out and socialise and sometimes work. As bladder and bowel symptoms are often “taboo” subjects, it can be hard to gain understanding in the community. Raising awareness of this disease and living with it is something I am passionate about, and hope this article does that justice.