My Overactive Bladder Turned Out to Be an Incurable Condition Called Interstitial Cystitis

Christina, 25, has interstitial cystitis, a condition that causes her to go to the bathroom up to 70 times a day.

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Christina, 25, first began noticing her bathroom habits were changing at the beginning of last year. Although she wasn't yet peeing much more frequently during the day, it was becoming obvious in the evenings that something was wrong.

"I'd need to go constantly," Christina told Cosmopolitan UK. "Just before I went to bed, I'd go to the toilet, come back to bed, and then need to go again straight away. That would keep happening until I finally fell asleep."

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The feeling of having to go to the bathroom constantly was frustrating for Christina, and when her family started making comments about how often she used the toilet, she began to feel concerned, so she decided to go to the doctor.

They said it sounded like an overactive bladder, and I assumed it was, too, until things got dramatically worse.

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"They said it sounded like an overactive bladder, and I assumed it was, too, until around September last year when things got dramatically worse," she said. By this point, she needed to use the bathroom roughly every 10 minutes.

"I'd be going up to 60 or 70 times a day, and the urge would constantly be there," she explained. "It's horrible. The reason I go so much is that, if I don't, I'm in physical pain. It feels like being at the last point where you can't physically hold it anymore... But I have that all the time."

The problem was starting to make her self-conscious, and it was taking up a large part of her day.

"One night I was watching a film at a friend's house, and throughout it, I needed to go six times. It was only about an hour and a half long," Christina recalled. "My friend's parents commented on how often I was going, and I just remember going home and crying that night because there was nothing I could do about it ... I knew, at that point, I had to go back to the doctor."

When she returned to the doctors, Christina was insistent they look into her issue further. Instead, though, doctors prescribed her tablets for an overactive bladder.

My friend's parents commented on how often I was going, and I just remember going home and crying.

"I don't like taking tablets unless I know there's been thorough tests to prove that's what's wrong; I don't just take medication for the hell of it," she said. "So I refused to take them."

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Not convinced the doctors' assumption was right, she pushed for a scan. Ironically, though, medical experts were unable to carry out the ultrasound properly because it required her bladder to be full; something it never was because of how frequently Christina would have to pee.

Instead, she ended up having a cystoscopy — a procedure in which doctors insert a tiny camera in the bladder to take a look around — and the issue became immediately clear: Christina had interstitial cystitis, and her case was a particularly severe one.

Interstitial cystitis is described by the U.K.'s National Health Service as a "poorly understood" condition that's also known as "painful bladder syndrome."

"My bladder was badly inflamed, covered in ulcers and hemorrhages," Christina said. "That's why it can't hold anything in there; it's all completely damaged. The nerves in the organ have also been damaged, so they tell me I need to go all the time."

Initially, Christina recalls feeling relieved after getting a diagnosis.

When I first found out, I was optimistic. But then I was told there isn't a cure for interstitial cystitis.

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"If nothing had been physically wrong, then it would have all been in my head," she said. "I wanted there to be something, and when I first found out, I was optimistic that it would mean we could find a treatment. But then I was told there isn't a cure for interstitial cystitis."

Now, a few months later, the condition has had a big impact on Christina's life.

"I'm working from home now until there's a solution. I can't fully do my role at the moment, so it's been adjusted and my company has been really understanding, but it's very hard for me to deal with," she explained.

Her condition has also affected her social life — and left her mental health vulnerable.

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"I don't really want to do anything or go anywhere anymore, and I used to be really outgoing," she said. "I'd go out and see my friends a lot, but even the thought of getting in the car and driving to my friends, who live half an hour or 45 minutes, away terrifies me. I find myself just wanting to be at home because that's where I feel most comfortable."

She continued: "I can't bring myself to want to be around people when I keep needing to go to the toilet; it's not fun for me to socialize anymore. I get panic attacks. Stress does tend to have a big link with interstitial cystitis, and obviously, I'm so stressed because of what's going on, so that doesn't help things — but I can't help but be stressed. It's a vicious cycle."

Stress is such a big factor in interstitial cystitis that Christina believes it might even have been the trigger for her condition. She went through a bad breakup shortly before the symptoms started emerging, but she doesn't know for sure whether this had any impact.

Stress does tend to have a big link with interstitial cystitis — but I can't help but be stressed. It's a vicious cycle.

Although Christina's doctors have explored various avenues for treatment to manage her symptoms, none of them have worked so far, so she's still suffering chronic pain every day. She's found that limiting her diet to exclude acidic foods, such as tomatoes and some fruits, has helped prevent particularly bad flare-ups.

"I'm trying so many different things; I do pilates and yoga to try and calm me, and I find when I'm actually doing them, the symptoms are relieved, which is great," Christina said. "I feel at my best when I go to the gym, so I make myself go every day, but as soon as I get back and try to relax, the symptoms come back straight away."

As it stands, Christina is awaiting a treatment called bladder instillation, in which the lining of the organ will be coated with medicine, and she's really hoping it'll make a difference.

"I'm trying to be optimistic about it, but I completely understand that it may not work for me as it's all trial and error," she said. "It's really hard to come to terms with. I try to stay positive, but I do have really bad days where I start crying because I'm sitting on the toilet and I've just been there literally 10 minutes ago."

Christina believes her case of interstitial cystitis got so bad because of how long she was suffering from the symptoms before her doctors could identify what it was. So she wants to raise awareness in the hope that more research will be conducted and that, one day, she might be able to lead a more "normal" life again.

"It's the worst thing I've ever dealt with," she said.

From: CosmopolitanUK
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