Whilst you might be more than aware of what cystitis is, every woman should also know these eight things about what interstitial cystitis is, too.
1. It’s way more common in women
Interstitial cystitis, also known as ‘painful bladder syndrome’, is a chronic inflammation of the wall of your bladder, which causes essentially a long-term, more severe version of the cystitis we all know and hate. It’s far more common in women – 90% of the 400,000 UK sufferers are female,and the Interstitial Cystitis Association (ICA) estimates that in America, between 3 and 8 million women are affected, compared to 1 to 4 million men. As if periods and childbirth weren’t quite enough for Mother Nature to bless us with, right?
2. The symptoms are like regular cystitis with the volume turned up
As with the more familiar form of cystitis, interstitial cystitis is characterised by the need to pee often and urgently, even at night, along with intense pain in your pelvic area. During your period, you might find that this pain is worse, and having sex can cause irritation too.
3. It can affect your mental health too
Interstitial cystitis is not always a 24/7 thing – symptoms can improve and worsen over time, for days, weeks or even months, but the crucial thing is that they do return repeatedly. The combination of chronic pain and having your life ruled by your proximity to the nearest bathroom is, understandably, hard to cope with, meaning that and the condition doesn’t just impact your physical wellbeing, but your emotional health as well.
4. It’s hard to get a diagnosis
Although it’s a recognised condition, it’s not yet known what causes interstitial cystitis, and there’s tons of research still to be done into whether or not it’s related to other illnesses, like fibromyalgia, chronic fatigue system or IBS – even the NHS currently describes it as ‘poorly understood’ as there’s so much still to discover. It can be tough to get a diagnosis for interstitial cystitis, but if you think you have it, it’s important to arm yourself with all of the info to give yourself the best chance possible of accessing the right treatment.
There is also ongoing research into whether IC may actually be a misdiagnosed chronic UTIs that can respond to antibiotics. The group CUTIC provides information about these studies and advice on what to do if you feel you have been misdiagnosed.
5. There’s no known cure
Unlike the cystitis that at least half women will get at some point in their lives, Antibiotics aren’t always the answer. In fact, there is no one-size-fits-all ‘cure’ for interstitial cystitis – because theories about what causes the condition vary from damage to your bladder lining or pelvic floor to an allergic reaction, it’s tricky to know what to target. You’ll probably need to try a few different options before you find something that works for you, but there are ways for you to take back control.
6. Lifestyle changes can help
Avoid trigger foods and drinks – alcohol (sob) is a big one – and limit the amount of liquid you intake, particularly before bed, so that the cystitis doesn’t disturb your sleep. A study conducted in 2008 found that smoking correlated with interstitial cystitis symptoms, so if you’re a smoker, you should cut down or ideally, stop. The ICA recommends gentle exercise, like pilates, yoga or walking, as ‘the heart of your bladder depends on good blood flow to the area and strong muscles around your pelvic organs to protect and support them’.
This can also help to manage your stress levels, which also play a factor in interstitial cystitis cases. Painkillers and antihistamines can make you more comfortable when you are having a flare-up, and some find that physiotherapy can help to retrain their muscles too. Every body is different, so listen to yours.
7. Surgery is an option
In severe cases, there is the option for prescription medications or even surgery, but these are generally for when other treatments have been tried and failed. There are various methods (including Botox – who knew?) which are designed to stretch and retrain the bladder, providing temporary relief, or more permanent surgeries where areas of or all of the bladder are removed.
8. Your doctor needs to know
The first step is visiting your GP – keep a note of your pain levels and the frequency that you need the toilet beforehand, so you can lay out your symptoms in detail. It’s likely that you’ll get referred to a urologist for tests, and then you can figure out the solution that works for you.