Alicia’s Chronic UTI Story

01 Oct Alicia’s Chronic UTI Story

Alicia’s first ever urinary tract infection (UTI) struck in the middle of the night.  She knew something was terribly wrong, but doctors at her local hospital in Spain looked at the negative dipstick and sent her home with some cream.  As the weeks went on, Alicia’s suffering intensified and so did her search for answers.   After a multitude of doctors, tests and procedures, and trying to manage work and family while her physical and mental health deteriorated, she learnt about a clinic in nearby England specialising in diagnosing and treating patients with complicated UTIs and other urinary symptoms.  She decided she had nothing more to lose and booked an appointment in the hope she had a treatable infection that her doctors had missed.  Read how Alicia was eventually diagnosed with a chronic UTI.

My first UTI was ignored and diagnosed as ‘irritation’

I remember the exact moment it all started: it was 3:00 a.m. on January 11th 2019. I had gone to bed feeling perfectly well, but suddenly I woke up with a horrible burning feeling down below like nothing I’d ever felt before, and terrible urgency. I got up, peed about 20 times, walked around the house, tried to cool it off with cold water, took a shower… all to no avail. I had never had cystitis, but I knew this had to be it. I knew from friends’ experiences that after a few days of antibiotics it disappeared, so I took it calmly.

After about two hours of relentless burning and urgency I decided to get dressed and visit urgent care. I told my husband to stay in bed so we wouldn’t have to wake up our kid, I’d just pop out and be back soon with medicine that would certainly sort me out in a VERY short time. I was so confident!

There is a hospital right across the street from my place with a gynaecological emergency ward.  When I walked in and explained what was going on they gave me the side-eye. “Your emergency seems to be urological, not gynaecological”, they said. I pleaded. It was 5 a.m., one of the coldest nights of the year in Madrid, and whatever it was I certainly did have a problem in the area concerning the gynaecological profession. They finally admitted me with some contempt, took a urine sample for a dipstick test and asked me to wait for an hour. Five bathroom trips later they called me in to tell me there was no sign of infection; it was possibly just “irritation”. They gave me a prescription for soothing vaginal cream and soap and sent me on my way. I believed them because I desperately wanted them to be right. I walked to the nearest open pharmacy in the cold and came home with my (useless) purchase, applied it and waited. Nothing changed. I spent the rest of the night on the couch, getting up every twenty minutes to go to the bathroom and feeling increasingly worse.

I had to beg the doctor to take me seriously

That morning I called in sick at work, managed to get dressed, took my kid to school and went to urgent care ward No. 2.  Again I gave a urine sample and sat for an hour next to the nearest bathroom. The burning and pain were getting more acute by the minute. This time the dipstick showed a small trace, but not enough to be considered infection by medical standards. The doctor told me it was probably “still irritation” and to drink a lot of water. I had tried to remain calm, but was so exhausted I couldn’t help crying in front of the doctor. I tried to explain: it had to be more than simple irritation. I couldn’t sleep because I was practically burning from the inside, kept having to go to the bathroom only to produce small trickles, and all the time felt like my insides were being stabbed with an ice pick. The doctor gave me an exasperated look like I was the ultimate urgent care ‘Karen’ and prescribed two water-soluble packets of a mild antibiotic usually administered for cystitis. He insisted that I probably didn’t have an infection, but “just in case”.  I thanked him with relief.

I took one packet that day and another the following day, and felt better right away. I finally got some sleep, felt human again and enthusiastically resumed my life. Two days later it was back.  Again, it woke me up in the middle of the night, and this time it was even worse than before. It was like someone had stuck a flamethrower up my urethra and left it on. I got dressed and braved the cold back to the previous urgent care.

The doctor was the same as the last time, and he was not too happy to see me. The dipstick showed no sign of infection at all and he said it was “probably stress”. It was impossible that I could be feeling worse than before, he said. But just to make sure (or maybe to get rid of me) he prescribed another two packets of the same antibiotic and sent me on my way.

I took a taxi to a 24-hour pharmacy and took the dose right away, right there. At this time I fully believed the doctors, still trusted that it would all go away, especially after a second dose. Perhaps I was being over dramatic, I thought. Perhaps I was being too whiny. What did I know, right? I’m not a doctor.

The dipstick showed a small trace, but not enough to be considered infection by medical standards. The doctor told me it was probably ‘still irritation’ and to drink a lot of water

Each time I completed the antibiotic treatment, my symptoms returned with a vengeance

The exact same thing happened: I finished the two packets, felt better and two days later it all came back. This time I went to my general practitioner and told him the whole story. He admitted  that dipstick tests often don’t give enough information, and ordered a urine broth test. It would take a few days; meanwhile, I was to drink a lot of water, take cranberry supplements and get some rest.

I spent an excruciating sleepless week waiting for the results. The water was supposed to “flush out the bacteria” (this is not totally true because bacteria can stick to the epithelium walls with devastating results, as I was later to learn, regardless of how much water you drink. I also found out that cranberry can increase the acidity of the urine, which bacteria might not like, but which certainly irritates the bladder/urethra area making it so much worse). I bravely followed his orders and, with my family’s support, managed to get through life until the results came in.

Lo and behold! There was enterococcus faecalis and klebsiella pneumoniae! Finally, the enemy showed its face! The doctor prescribed a whole week of a stronger antibiotic and I happily dove into it. Four days into treatment I was feeling like new.  I was confident I was on the mend. On the seventh day I started to feel some stinging again but the urgency, burning and pain were gone, so I believed it was just a lagging irritation.

When all the symptoms came back with a vengeance two weeks later I actually believed I’d got a new infection. I later found out that it was the same one, but by now it was becoming embedded because of an insufficient antibiotic treatment from the start.

My experience with a urology specialist was far from helpful

But I still didn’t know what was wrong with me. I researched urologists. I asked around, did some Googling and found that one of the most reputed private urologists in Madrid accepted the health insurance we have at home (public health services in Spain are usually excellent—but apparently not when it comes to unexplained cystitis). It was a sign!  I had to wait two weeks to get an appointment with him, which is not bad at all given that he is supposed to be one of the best. Somehow I survived; by then I had a mental map of all the public bathrooms in our neighbourhood so I could relieve myself whenever I went out, and I’d made it a habit of walking into bars every time I left the area, buying a bottle of water to go and visiting the bathroom. I’d become a pro at doing my thing whilst tautly flexing my calves, knees and thighs to avoid touching the seat. Public toilets were my personal gym and every day was leg day for me.

By the time I got to this prominent doctor’s office both of my legs were wobbly. I went through my history, sat back and gave him a hopeful bright-eyed look. I was practically fangirling. I was sure he’d bolt out of his chair and indignantly shout “those peasant doctors don’t know a thing! I know exactly what’s wrong with you because I’m one of the best, and I WILL CURE YOU!”

That didn’t happen. He gave me the bemused “I see” look I was becoming used to by now, and booked me for another urine culture and an ultrasound. Two horrible weeks later I had the results and a diagnosis—or rather, a lack of diagnosis: there was no infection and the ultrasound was perfect. Therefore, there was nothing wrong with me. I told him there had to be something, I could tell that I was sick and something was wrong down there. He waved a hand and said I just needed to drink plenty of water, take cranberry supplements and get some rest. He also said there was nothing else he could do for me and shrugged his shoulders.  That’s when I started to panic.

Two horrible weeks later I had the results and a diagnosis—or rather, a lack of diagnosis: there was no infection and the ultrasound was perfect

Multiple doctors, tests, procedures, treatments and I was still no better 

March to May 2019 were terrible months. I tried two more urologists. I had two invasive procedures: first a cystoscopy, where they stick a probe up your urethra and look for lesions. Surprise, it was perfect! I then had a urine flow test, which is really embarrassing. They catheter you, pump you with water and you sit half naked on a bottomless toilet seat while a nurse asks you: “are you uncomfortable yet?”. When you feel like you’re going to burst you pee inside a jug, which they use to measure how much you can hold in. Oh, and I forgot: they stick another catheter up your rectum to measure rectal tension. All that fun was also for nothing: my results were perfect. This time the diagnosis was “inflammation” and I was prescribed steroids. 10 kg later, I was no better than before.

I also visited my gynaecologist to check if I had thrush, yeast, some nasty STD… all was apparently perfect and healthy. Given that I’m already at an age when most women go through perimenopause, my gynaecologist suggested a hormonal test to see if I was suffering from an imbalance. I had the test. There was no apparent imbalance.

Tired of male doctors who insisted that I was overreacting and it was probably all in my head, I sought a female urologist who took me a bit more seriously. She prescribed a two-week course of a stronger antibiotic and assured me it would “fix” me. It didn’t; after a few days all the symptoms came back as usual. She then said it was residual irritation from the “trauma” and prescribed an antidepressant which also acted as a pain blocker. I sheepishly agreed with her and started taking it. Five more kilos later I had only achieved to sleep better (it turns you into a zombie, a fat zombie to be precise) but my symptoms were still there. As soon as I woke up from the initial daze, in the morning they slowly started to reappear and in the afternoon they were in full fledge.  By this time I was an overweight, blubbering wretch.

I had reached the depths of despair

One of the many afternoons I spent desperately Googling my symptoms to see if I could figure this out on my own, I came up with a term: interstitial cystitis (IC). Basically, according to Facebook groups and online information, it’s a chronic, incurable condition which can be managed with a strict diet, lots of supplements and a good dose of stoicism. I needed to grab on to something, so I started to follow these guidelines, visited a naturopath and kept my fingers crossed. I also read about biofilms and started taking D-mannose, which gave me some relief. At least it managed to take the “edge” off.

By mid-June I was feeling a bit better, but there were many ups and downs and my life was still miserable. I really had no life to speak of. I could not travel too far or stay out for too long. I didn’t want to see anyone. I couldn’t sit through a movie without having to visit the bathroom once or twice, couldn’t go to the theatre because you are not allowed to get up for over two hours, could not go out for a meal because I had to avoid a lot of food items, and the trip there and back had to be calculated based on my chances of going to a bathroom somewhere along the way.

I have an office job, which I’m thankful for, but my continuous visits to the toilet and my badly concealed miserableness were becoming notorious. I had told my colleagues about my problem, and as the months went by I know they too wondered whether I was a bit crazy. A well-meaning co-worker took me aside one day as I was fighting off tears and said “you know, maybe it’s all in your head.”  It made me retreat into my own self even more.

I remember feeling a deep panic at one point, believing that if my life was going to be like this from now on, if there was no hope of improvement, I honestly could not fathom carrying on with it. There had to be something I could do.

My symptoms and history were similar to others who had been diagnosed with chronic UTI

Whilst perusing one of the IC Facebook groups where many posts were stories of woe, requests for prayers and not a few “healers” that claimed to fix you in exchange for a good chunk of your money, I came upon a post from a woman who claimed she’d been cured by a Professor Malone-Lee in London, England. There was also a link to an article in The Guardian where patients who’d been through the same ordeal as me had experienced improvement thanks to this professor. He prescribed long-term full doses of antibiotics to kill the bacteria that hide inside bladder wall cells and biofilm and cause chronic symptoms after an infection that was not fully cleared. I joined two “embedded chronic UTI” groups and collected some evidence and stories on this topic. Suddenly, the idea of actually going to London started to seem reasonable.

The summer holidays were almost there and I had nothing to lose apart from some well-earned money. If anything, I would spend a few days in London, a place I love, although I feared I’d not be seeing much of it. I spoke to my husband, and surprisingly enough he didn’t think it was far fetched: by this time he was as desperate as I was for me to get well. So I booked an appointment for August 2019.

I flew to London, managed to get to Harley Street and consulted with a lovely urogynaecologist from the Professor’s team, Dr. Rajvinder Khasriya (you can watch a presentation by Dr Khasriya here). She listened to my story (no laconic “I see” expression this time, only real empathy!), checked my urine with a microscope and diagnosed an embedded infection. I was to start taking 2g of antibiotics and 2 tablets of a urine disinfectant every day, and return four months later. A good friend who lives in London came with me, and when the appointment was over I had a good cry on her shoulder, overwhelmed by hope and relief. I felt validated.

My chronic UTI diagnosis changed my life

I visited Dr Krashiya again in December, already feeling much better, and my urinary cell counts (infection signals) were down considerably. In April I had a Skype consult because of COVID-19 lockdown, and my antibiotic dose was increased to 3g per day to give it a final push.

Fast forward to now, October 2020. It’s just over a year since I’ve been on this protocol, and I’m 95-98 percent better. In fact, I’ve recently started to have totally symptom-free days since it all started a year and seven months ago! Even though I can’t seem to tolerate the higher dose without getting thrush, improvement is still happening.

I have another appointment in London in early October… and I’m keeping my fingers crossed hoping that I’ll be able to make it in spite of the pandemic. There’s always Skype and they can still go on symptoms alone, but it’s important to get a proper urinalysis. Whatever happens, I now have my life back and I know the end of this long tunnel is around the corner.

I admit that when I started the treatment I was very afraid to take the long-term, full antibiotic dose because I’d been advised against it by doctors and people from the IC groups, but now I truly believe this was my only option.

I have had a few flares along the way, which were to be expected, but for the past few months, especially the last two, I have regained my life. My bladder is back to normal, I don’t have the burning or the frequency, just some stinging/discomfort and occasional pain which was probably thrush from the antibiotics. I’ve been using boric acid pessaries  to treat the thrush with very good results. Whenever I feel pain I use cannabidiol, which works like a charm. I can eat or drink whatever I want, go for long walks, travel, take care of my kid, go swimming, enjoy life… I have regained my mental health (I stopped taking the antidepressants a while ago) and look forward to the future. I’ve been able to start exercising again, and hopefully in a few months I won’t look like a giant snowball.

It’s just over a year since I’ve been on this protocol, and I’m 95 to 98 percent better. In fact, I’ve recently started to have totally symptom-free days since it all started a year and seven months ago!

I take probiotics and vitamin supplements to support my immune system and ward off more bouts of thrush, and I am really hoping I can soon start weaning off the antibiotics.

I find it deeply frustrating that, being from a country with quality healthcare available to all, I had to travel abroad to get proper treatment. I am incredibly thankful that I had the resources to do this, but many people out there do not. I really hope things change.

My advice to others:

• My advice to you going through this hell would be NOT to give up. If you suddenly come down with cystitis symptoms, please consider a 2-3 week course of antibiotics right away and take them until your symptoms have gone. DO NOT let the infection become embedded and chronic. DO NOT settle for a diagnose of IC. It is an extremely rare condition; most of the time it’s just an umbrella term for symptoms that most doctors can’t explain. DO NOT trust urine culture tests: they are only 50 percent correct.

• Most patients, especially if they are female, are brushed off as having anxiety or phantom symptoms because most doctors believe no evidence of disease is equal to no disease, thus the patient must be making it up and their only option is to take psychiatric drugs and pain blockers indefinitely. This can be far more dangerous to your health than long-term antibiotic treatments.

• Not only are urine cultures unreliable as an indication of infection, especially when it’s embedded; established antibiotic protocols are constricted by outdated dose and treatment indications. If a dog has a UTI the veterinary protocol is to prescribe a 2-week dose of antibiotics. For a human, however, it’s just three days to a week, depending on the country.

• A UTI doesn’t always become embedded, but when it does it can have a devastating impact on your life and you will struggle to get rid of it or find someone who can treat it properly. You can try to go the natural route with D-mannose and supplements, and that might work if you’re really lucky.  But embedded infections usually need a robust, vigilant antibacterial waiting to attack the pathogens as they are freed from the cells/biofilm, and that might take months or years.

• In the embedded/chronic UTI support groups there is documentation on over 40 years of medical studies made by Professor Malone-Lee and his peers. Please take some time to read them.

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