I’m 27 but my bladder makes me feel 87—my UTI-like condition took seven years to diagnose

At first, I thought I just had a weak bladder. Then I thought I had a UTI. Then another, and another. But every time I handed in a urine sample, it came back normal. I was told I was stressed. I was told it was anxiety. I was told to drink more water, less water and just relax.

It got to the point where everyone around me, including the doctors, was telling me it was just in my head. I had started to convince myself that there was something wrong with me mentally, but deep down, I knew there was something else. I felt 16 with the bladder of someone seven decades older. What no one told me was that I might have interstitial cystitis. For seven long years, I lived in a body with chronic pain that felt like it was betraying me.

Interstitial cystitis, also known as IC, also known as painful bladder syndrome, is a very poorly understood condition. It has similar symptoms to a urine infection, such as constant urgency, bladder pain and pelvic pain, according to the NHS, but the difference is I live with these symptoms 24/7. 

It feels like a UTI; symptoms can come and go in flares, and stress can make it worse, but urine tests come back clear. What makes it even more confusing is that women over the age of 40 are usually the ones diagnosed.

But, it isn’t just a weak bladder; it’s not psychological, and it is definitely not simply an overactive bladder.

IC is a chronic inflammatory bladder disease, and it often takes years to diagnose because there’s no single, simple test for it, nor has it been a well-recognised condition in the UK.

Over seven years, I was prescribed antibiotics I didn’t need. I tried cranberry tablets. I cut out caffeine, alcohol, citrus fruits, and acidic foods, but it was still there. 

It wasn’t until I decided the NHS couldn’t help me any further that I went private. I had a cystoscopy and bladder hydrodistention under anaesthesia, which involved inserting a camera into the bladder to look at the lining, as well as the bladder being gently stretched due to my reduced bladder capacity. It unveiled chronic interstitial cystitis and Hunner’s lesions. 

Hunner’s lesions are distinct inflammatory patches on the bladder lining. Simply speaking, I was told they were like ulcers, and when my bladder was stretched, these areas cracked and bled. It explained why I had such severe pain, intense urgency, flares that felt sharp and pain when my bladder was full.

The relief I felt when being told I wasn’t going crazy was incredible, but this soon dropped when I was told there wasn’t a cure or much in the UK that could be done.

One of my treatments involved medication being inserted directly into my bladder, something I never imagined needing in my 20s. I still do this once a week, and while it does help, it’s painful and uncomfortable.

I’ve also had around four cystoscopies as well as bladder hydrodistentions, and I’m on lots of medication, but the reality is it’s just something I’ve learnt to live with. 

In the early stages, it was cancelling plans, it was missing university, it was navigating dating as a young girl with a chronic condition, and it was losing friends. I had to explain that I was having problems with my bladder, and at that age, it was totally embarrassing. It was teachers not letting me go to the toilet, and it was having to sit exams in separate rooms, with no one understanding. It was using the disabled toilet with a radar key despite nothing looking wrong on the outside, and getting funny looks and comments.

Now I’m in my late 20s, I’ve learnt to live with it, but it does still mean sometimes missing work due to the pain being unbearable and not being able to get out of bed, it does still mean missing plans, and it does mean my friendship group is smaller than ever. I also have to plan road trips and holidays with military precision, mapping out every possible toilet stop.

Management is about diet changes, pelvic floor therapy, medication, learning triggers and pacing yourself. I also occasionally have bladder botox and acupuncture, but I don’t find these particularly useful. I’m on the waiting list for my fifth cystoscopy, but the wait could be as long as two years.

Still to this day, when professionals ask me if I have any long-term health conditions, and I explain that I have interstitial cystitis, not many know what it is. The thing about having “cystitis” in the name is that people automatically think it has something to do with cystitis. The real reality is, it’s very, very different. 

But I’ve learned to advocate for myself in medical settings. I’ve learned that “normal test results” don’t always mean nothing is wrong.

But most importantly, I’ve learned that chronic conditions don’t always look dramatic from the outside; they can quietly shape your entire life. 

If you’re constantly being told your symptoms are just stress, keep pushing. If you feel dismissed, ask for another opinion, and if you know something isn’t right, trust yourself. it’s not just women that suffer from this condition either, men can also have IC.

The NHS calls it bladder pain syndrome, but after seven years of fighting to be believed, that name feels far too small to me.

Seven years was a long time to wait for validation, and I know many other IC patients have had to go through the same.

Symptoms of IC

• bladder pain or pain in your lower tummy or back
• feeling like you need to pee, even when your bladder is empty
• peeing often, usually just small amounts, during the day
• waking up at night to pee
• leaking out a small amount of pee if you do not get to a toilet quickly enough

If you experience any of these symptoms, it’s recommended to contact your GP.