‘I kept getting UTIs. My male doctor said, ‘Do you think the pain might be ALL IN YOUR HEAD?’ I was mortified.’: Woman with chronic urinary tract infections urges ‘you are not alone’

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“It all started at the age of 16. I kept getting multiple UTIs (urinary tract infections), these are caused by bacteria, typically E. coli. I would receive a 3-day course of antibiotics and be sent on my way. Most of the time they would clear up after the antibiotics, but some came back with a vengeance and I was desperate for some answers. My doctor didn’t believe that I had suffered 4 or 5 infections in the space of 8 months, as I had to seek emergency care on multiple occasions.

Courtesy of Lexi Kelly-Hunt

So, it was almost a year after my first UTI (minus the few I had as a child) that I had a renal ultrasound. Fortunately, nothing was untoward except my left kidney was slightly bigger, but that was of no concern. Going back to my doctor she believed it was ‘just because I was WITH my boyfriend.’ I thought surely this is not the sole reason for me getting UTI after UTI. Fair enough, sex can be a cause, but what did other people do? Stay single for the rest of their life? I was at a bit of a loss. I later found out the bacteria which causes my infections are Staphylococcus Saprophyticus, natural flora from my own vagina. So, I was the cause.

I was later referred to a urology department. They gave me two CT scans to look for kidney stones (unsuccessfully) and due to ‘no other options,’ I was discharged with nowhere to go. More UTIs came – this time with negative dipsticks tests in the doctors meaning this was no bacteria in my samples– this meant I shouldn’t receive antibiotics, yet I was still in so much pain and agony. I had a new GP who sent me for every blood test under the sun and referred me to gynecology in another hospital.

Courtesy of Lexi Kelly-Hunt

I got there and they laughed in my face.

They said I was cheeky after being discharged from one hospital to then get referred to another. This gynecologist didn’t want to deal with me and passed me to urogynecology. I felt worthless being passed around every department like nobody wanted to deal with me. Yet, one appointment changed my life. A female urogynecologist started to ask me different questions no other consultant did.

She asked if anyone ever gave me an internal examination. Nope. A smear. Nope. (In England, we don’t get smear tests until we’re 25). A urinary flow test. Nope. A cystoscopy? Nope. She was horrified I hadn’t had anything done. She then proceeded to book me in for everything and performed an internal examination there and then (with my permission, of course).

She was the first person to bring up INTERSTITIAL CYSTITIS after me pressing doctors for months. This appointment was 18 months ago and I’m still waiting on this diagnosis.

I had a cystoscopy (camera in your bladder) and there was no sign of IC, but early signs of an overactive bladder which causes strange lines on the bladder wall. At 20 I wasn’t supposed to have ANY of these lines, but I had 5. They also found blood clots in my bladder, possibly from infections. I have now discovered non-ulcerative IC exists and no signs are seen with a cystoscopy, just the symptoms patients experience. They’re now discussing this as a possibility for me.

Courtesy of Lexi Kelly-Hunt
Courtesy of Lexi Kelly-Hunt

Interstitial cystitis is a chronic bladder condition causing patients to suffer from UTI-like symptoms, pressure on the bladder, and chronic pain. It is very difficult to diagnose and extremely hard to treat with no cure. Medications and bladder instillations are available to repair the damaged bladder cells. I’m currently waiting for these and hoping they can give me some relief.

Symptoms include burning when urinating, irritability, bladder pain when full, frequency, and urgency for the toilet. I also suffer from painful bladder spams; I have to sit on the toilet for 20 minutes until they pass. The main one is the heavy pressure feeling and swelling which makes me feel like my bladder is going to fall out. I basically tick every symptom for IC, doctors are just hesitant to diagnose me.

Lifestyle and diet changes are a big aid for IC patients like me. For instance, citrus, caffeine, alcohol, and spicy foods are all off-limits now as they are major triggers for an IC flare. I’m currently on a medication called pregabalin for the nerve damage on my left side and pain killers when I need them. The only other thing I can do is use a hot water bottle or get a bath till the pain passes. I also go to acupuncture sessions which I’ve found are an amazing way to help with the pain. The explanations from Chinese traditional medicine make so much more sense.

Courtesy of Lexi Kelly-Hunt
Courtesy of Lexi Kelly-Hunt
Courtesy of Lexi Kelly-Hunt

As I am young and appear to be fit and healthy, many doctors don’t believe my symptoms or suggest I’m over exaggerating. This has put me off going to doctors or A&E when I’m in a great deal of pain. Anyone else would think they’re dying. I’ve also seen a pain specialist because I suffer from chronic left flank pain (possibly nerve trauma from past infections). Because I walked in un-assisted, at the time I still danced so was fairly flexible, active, and still had a quality of life he asked me…’DO YOU THINK THE PAIN MIGHT ALL BE IN YOUR HEAD?’ I was mortified. I felt like a degraded woman from years ago who would be charged with hysteria. There is nothing worse than diminishing someone’s symptoms. I may look fine, but I’m simply good at hiding when I’m in pain.

I actually questioned myself after this. Am I making up the symptoms? What for? Who wants to actually be in pain because I certainly don’t. I want to get on with my life in peace. The ripple effect that comment had on my life was crazy. It could push a person too far and I’m thankful I have such a massive support system both at home and online to get me through difficult appointments like this. I’ve found this happens more often than not in the medical world, which really upsets me.

One of the most difficult moments during all of this was on the 5th of August 2017, my brother’s wedding. I woke up to the familiar symptoms of burning and pain. I tried to brush it off and get on with the preparations as I was a bridesmaid. The pain eased as I got ready, hair and make-up done, and then walked my niece down the aisle. I was all good sitting through the speeches, but I thought I’d pop the toilet before dinner. Well, that was one of the biggest regrets I have. I had to hold my screams in whilst sitting on that toilet. I was in agony. It felt like my bladder was on fire and someone wanted to crawl out of it. Pain relief wasn’t working. Several unsuccessful toilet trips later, I decided we had to find help.

Courtesy of Lexi Kelly-Hunt

I tried to smile for pictures in between with family so everything seemed fine. I look back on the pictures now and I just know I’m in pain. The wedding was in Kent, almost 7 hours away from our house, but thank god for google. I found a small minor injuries unit nearby and my dad rushed me there to receive treatment. I was hurled over the check-in desk like I was giving birth. They gave me antibiotics but because of the pain I was in, my GP back at home was convinced I passed a kidney stone that afternoon.

I was more bothered about the fact I had missed my brother’s wedding. I’m not in any of the fun evening pictures where everyone is dancing together. I never saw their first dance. I just spent the night on the bathroom floor of our hotel. Travel really affects me and most trips away I find I’m suffering for a while. Most of my big ‘freak-out’ episodes happen whilst I’m away.

After starting my blog and Instagram page, I found relief in sharing my experiences and helping others who were seeking advice. I was getting rid of all my built-up emotions and found people who can actually empathize with me rather than trying to explain to someone what I feel like.

At first, I didn’t class myself as having a chronic condition. Maybe I was in denial, I don’t know, but coming to terms with that and accepting it is probably the hardest part. I don’t see myself as ‘ill.’ Sometimes, physically I do look ill. I just used to say I suffer from bladder infections and leave it there, but my symptoms are so much more than that and take over my whole life. I noticed they were affecting my quality of life and realized I do need to class myself as chronic so I can deal with those consequences. To overcome this, I try everything! Anything anyone has ever suggested I have incorporated into my lifestyle or diet to suppress the symptoms I experience.

Courtesy of Lexi Kelly-Hunt

I wanted to share my story so someone going through similar symptoms or any other chronic illness doesn’t feel ALONE. I felt alone for so long. No doctor had explanations and I couldn’t find anyone in the same position as me. Social media has such a big network of support out there for us. Lean on those people when you need to. Take all the advice you can get because these people are living through it, unlike the doctors who are ‘trying’ to treat us. Many people have found alternative remedies and they share them across these platforms. The sense of community is amazing, we all have one thing in common.”

Courtesy of Lexi Kelly-Hunt

This story was submitted to Love What Matters by Lexi Kelly-Hunt. Follow her on Instagram and Tumblr. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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