The Eye-Watering Condition That Means You Basically Have Cystitis 24/7
The Debrief: Ever had a UTI? Imagine having those symptoms on a permanent basis. Yep, just imagine.
Picture the scene. It’s a Friday night, and after a few drinks at the bar you feel a very urgent need to pee. Except the queue for the girls’ toilets is fucking massive. You can sense the pressure in your bladder getting more and more painful by the minute, until it becomes unbearable. Once you finally get in the cubicle and sit on the toilet, you’re immediately relived. But for Francesca, 27, the relief never comes. That bladder pain is something she experiences almost daily.
The PR from Yorkshire is one of 400,000 people in the UK who has been diagnosed with interstitial cystitis (IC), a chronic and often disabling bladder condition. 90% of sufferers are women and many of them are diagnosed in their late 20s.
What is IC?
Also known as painful bladder syndrome, IC is poorly understood. Doctors aren’t exactly sure what causes it. ‘Unlike with regular cystitis, there’s no presence of an infection,’ says Rizwan Hamid, a Consultant Urologist at London Urology Associates . ‘If you have signs of bacteria in your urine, then it’s a UTI, which can usually either go away by itself or with a course of antibiotics. This isn’t the case for women with IC.’
Some people with IC have an inflamed or scarred bladder, which could indicate the immune system is mistakenly attacking it. ‘Research is still ongoing, but there’s also a more recent theory that it might even be neurological, an issue with tense nerves in the pelvic floor,’ Hamid says.
What does it feel like?
Most of us will have had cystitis at some point. At any given time there will be a female friend in one of my Whatsapp groups asking everyone how they can quickly get rid of a UTI. It’s a universal fact that the familiar symptoms of needing to piss more urgently and often than usual, pain in your stomach and generally feeling unwell and wiped out are the worst. The awful thing with IC is that it mimics this – and then some.
One of the main symptoms of the condition is needing to go to the toilet really frequently. It’s common for people with IC to go 60 times a day, including through the night. ‘At my worst, I was only able to sleep in 15-minute bursts as I was getting up 13, 14 times a night,’ Francesca says.
Flossie, 25, says this can cause problems in relationships or if you’re away with friends, as you’re always paranoid of disturbing other people’s sleep by getting up too much. ‘It’s also isolating. One of the most lonely things is sitting alone on the toilet in the middle of the night,’ she says. A lack of sleep leads to fatigue, which can really interfere with your work and social life and will make you feel a hell of a lot worse.
Chronic pain is another problem associated with IC. This can be felt in your bladder, urethra and pelvis and can be really intense. Being on your period can magnify the symptoms tenfold. ‘I have to take strong sleeping pills during the first two days of my period,’ Francesca says. ‘I think the pressure and bloating might be what makes it so bad, but I’m not sure.’
Sex can also be a no-no at times. Rizwan Hamid says in some women, this can cause their symptoms to worsen, as well as relationship difficulties if your partner isn’t understanding. ‘When it’s painful you just have to avoid doing it,’ Francesca says. ‘It’s massively annoying for both of you, but it can’t be helped.’
IC sufferers usually have periods of feeling relatively normal, followed by a recurrence of symptoms known as a ‘flare’. While they can be triggered by certain things like stress, eating certain foods or the above factors, flares can still hit at random, which can be really frustrating.
How is it diagnosed?
‘We use a diagnosis of exclusion,’ Rizwan Hamid explains. ‘First, women showing IC symptoms will be checked for a UTI, then they’ll be given painkillers. It can take a long time to get a referral.’ He says on average it takes women around 18 months to get a diagnosis, but for some this can be a lot longer.
‘I was diagnosed in September 2012,’ Francesca says. ‘But I’d been having symptoms since I was 21. I saw four different doctors over the years, before one day I had an appointment with a locum who was fresh out of medical school.’
She recognised the symptoms and referred Francesca to her local hospital for a procedure called a Cystocopy, where the inside of the bladder is examined under local anaesthetic using a thin, fibre-optic tube. This is often used to confirm a diagnosis of IC.
What are the treatments?
There’s a few different treatments for IC out there, but it’s a case of ‘trial and error’, as what works for one person won’t work for another. If you’re diagnosed with it, it’s likely you’ll try a few before you find what works for you.
A range of medicines are available to help manage symptoms, from low doses of an antidepressant called amytriptline and some anti-histamines.
Aside from that, some people with IC have Botox injections directly into the bladder to stimulate it, and there’s other more invasive procedures too. Francesca has been having bladder installations every month at hospital, where a solution is administered directly into the appendage via the urethra, to help protect the bladder wall. ‘It sounds like it’d be mega-painful, but it doesn’t hurt,’ she says. ‘It’s just not really working for me, so I’m probably going to have to try something else.’
Terrifyingly, 5% of people with IC will need to have their bladder removed and will be left with a stoma. ‘This is a last resort and only in the most extreme cases, for people who have tried and failed everything else.’ Rizwan Hamid says.
How do you manage it day-to-day?
Lifestyle changes are one of the most important things you can do according to Rizwan Hamid. He says 20% of his patients can manage their symptoms through this alone.
‘I keep a note of things that make me feel worse,’ Flossie says. ‘Tomato-based things, fruit juice and spicy food in particular are bad, as well as popcorn, weirdly.’
Alcohol is one of the key things to avoid, so no more red wine with your Sunday roast or tequila shots on a rowdy Saturday night out. ‘I was diagnosed during my A-levels,’ Flossie says. ‘Obviously when I got to uni, it was Freshers’ Week so I buried my head in the sand a bit and ignored it. It did make my symptoms a lot worse, so I drink very occasionally now. I haven’t got much of a choice.’
So what should you do if you think you might have it?
Ultimately, the most important thing you can do is push for a hospital referral, so you can have a treatment plan drawn up in order to get the symptoms under control and get back to living as normal a life as possible. If your doctor is fobbing you off, get a second opinion.
‘I really think the fact it’s so poorly understood is a feminist issue,’ Flossie explains. ‘Even after my formal diagnosis, I had other doctors tell me it was just stress or a regular UTI. I felt like I was being written off as a hysterical woman.
‘It’s only really you who knows what is normal for your own body, so if you start getting these symptoms make it clear you know something’s not right. Pretending everything is OK will just make it worse.’ And with IC being bad enough as it is, that’s something you’re going to want to avoid doing.
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