When Elizabeth McCafferty started taking the acne drug Roaccutane, she hoped it’d clear her skin in months. But soon, she was struggling with bladder issues that had long been ignored. 

In October 2021, I was prescribed Roaccutane – a drug that many people think of as a ‘last resort’ for acne management. Months later, the decision to take it felt like it might have ruined my life forever. The adverse side effects of the drug had deterred me for years: depression and mood swings, rashes, sickness, peeling skin, dry skin, dry eyes, stomach issues, nose bleeds, joint pain… the list of potential symptoms has been well-documented.

Like many other people with acne, I came to Roaccutane after months of trialling different medications. As I sat crying in a dermatologist’s office, I was warned that the drug would be my only choice – the doctor refuting my concerns about the potential side effects. But after spending far beyond my means on acid peels, skin lasers, microdermabrasion, extractions, advice from private dermatologists and allergy tests, I finally cracked and decided to try Roaccutane on the lowest dose. 

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If you google the drug, you’ll find warnings that skin can look worse than ever when you first start taking it – and that was certainly my experience. Huge pustules erupted all over my face, as the first layer of dead skin cells came away and pushed deeper acne to the surface. 

Despite this stressful ‘purge’, I felt positive that the medication was clearly working and that the problem would be rapidly solved. But within three weeks, the side effects started to worsen. And this time, it wasn’t my skin that was flaring up.

UTIs, endometriosis and roaccutane

I’ve always had issues with my bladder, with UTIs almost guaranteed after sex, intense bladder pain made worse by stress and ‘flutters’ or ‘spasms’ after peeing. As someone who has had four surgeries for endometriosis, I’m all-too familiar with uncomfortable bladder symptoms. This time, however, something felt seriously wrong.

The pain became a more intense, daily problem. The constant UTIs couldn’t be caused by sex; the continuous burning sensation and bladder spasms lasted for hours, retriggered every time I went to the toilet. Slowly, I stopped being able to do daily activities due to the discomfort.

It got so bad that on one occasion, I had to sit on the ground in the middle of east London, taking deep breaths as my horrified friend looked helplessly on. I immediately called my GP, but had to wait weeks for an appointment. Urine dip tests came up positive for an infection, but when sent off to a lab, returned as negative. Home STI kits and allergy tests all came back negative, too. While waiting for an appointment with a specialist, I’d regularly phone 111, visit A&E and spend hours on internet forums trying to self-diagnose.

It was around this time that I got the biggest break in my career so far, which meant working abroad for a number of months. In a last-ditch attempt to sort my bladder issues out, I managed to nab a urology appointment back in London, where I was told that I might have one of two possible conditions – or at the very worst, both concurrently.

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The first possibility was a chronic recurring UTI, which is essentially when a UTI becomes a long-term issue. It’s usually caused by a previous infection never quite clearing up with a long enough course of antibiotics. 

The second was that I might have interstitial cystitis – a painful, chronic bladder problem which mimics the symptoms of UTIs but is caused by inflammation and not an infection. This is extremely common in women with endometriosis, as scar tissue can both cause and exacerbate this issue. Given my medical history and the fact that the majority of the endo was found on my bladder, I was much more at risk than most.

By this point, it’d been over a month and I had a virtual check-up with a dermatologist to check how I was getting on with the Roaccutane. I mentioned that my skin was starting to look much better but I had huge amounts of bladder pain, and asked whether it could have any links to the tablets. 

Immediately, I was advised to stop taking the drug and was put on topical treatments only. 

Can Roaccutane cause bladder problems?

When I asked both of the urology and dermatology specialists that I’d been dealing with, they couldn’t say whether Roaccutane had been the cause of my discomfort – but both recommended I stop taking it.

Even after coming off the acne medication, I was still having trouble. I was prescribed the pain beta blocker amitriptyline to try to manage the spasms from the potential interstitial cystitis, and was advised to take an antibiotic after sex as a preventative measure against future UTIs. 

I was also told to avoid acidic food and drink like citrus, coffee, tomato, alcohol and spicy food. By this point, I was overwhelmed with lifestyle changes, but so desperate for the pain to stop that I cut everything out immediately.  

I reached out to dermatologist Dr Sasha Dhoat to try and understand more about the possible link between Roaccutane and the bladder. Could these tablets really have caused my pain or was it just a rare and unfortunate coincidence? 

“It was probably just a perfect storm. Genetic predisposition to cystitis, active inflammation, then drying of mucous membranes with Roaccutane and more acidic urine,” she explains, adding that this kind of reaction “is very rare and personal to the patient.”

Bladder-related side effects are extremely rare (even with endometriosis)

It’s important to stress, Dr Dhoat says, that while this has been a very difficult and disappointing experience for me, Roaccutane might be a really positive experience for other women with endometriosis. Just because I had a rough time, doesn’t mean someone else will.

In a weird way, I’m glad that this rare side effect has helped to expose the underlying problems with my bladder. I’ve heard amazing things from others who have tried Roaccutane, and I’m convinced that with or without the prescription, my bladder issues would have reared their head eventually. 

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If taking the drug hadn’t strengthened the force of my symptoms, my bladder problems may have taken longer to diagnose. A year on, I am still (as professionally advised) taking an antibiotic after sex and I haven’t had a single UTI since. I still avoid coffee, citrus and spicy food but have no issue with tea or tomato (thank god I can still eat pizza).

The positive takeaway is that this whole experience has really helped me to listen to my body. I still do get bladder flutters and spasms, but they’re no longer daily occurrences. I’m now on the path to learning how to control and manage symptoms.

I’ve started going to pelvic physio in an attempt to loosen the pelvic muscles around the bladder. In a state of tension and stress, these muscles can tighten around the bladder within the pelvis and make symptoms worse, and the difference since learning various techniques has been huge. 

Everyone’s body is extremely different and in this case, taking Roaccutane pushed mine a bit too far. I’ll think twice before making a big medical decision in the future, and be braver in self-advocating when something doesn’t feel right during an appointment. 

Images: Getty

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