06 Jun Lindyloo’s Chronic UTI StoryReading Time: 4 minutes
Lindyloo is a Dutch woman with a history of bladder problems spanning three decades. She was treated for monthly UTIs, until short-course antibiotics no longer had an effect. By now she was in constant pain. Bedridden and in emotional turmoil day after day, she had the choice of giving in to her painful illness, or gather the energy to find a solution. When Lindyloo took to the internet and learned of a UTI specialist in England, she knew she had to get to the clinic if there was any hope of improving her quality of life. Lindyloo made the painful journey and her treatment has been life changing. Read more about her story to find out why.
I developed monthly UTIs
I am a 55 year old Dutch bladder infection survivor! Nearly three years ago I was in such terrible pain, my life was not worth living anymore.
I have had bladder problems for 32 years. In my early twenties I had a cystoscopy with hydrodistention that indicated bladder lining damage and was advised not to drink coffee. This was one of the worst operations of my life that I would never repeat as it made matters worse not better!
My frequency continued and I developed UTIs, infrequently at first. Then as I got older they came more frequently, until the last years I had UTIs every month!! I always responded to antibiotics. However, with antibiotics this frequent, one by one antibiotics had become less effective. I was suffering from nasty antibiotic side effects. I would be getting better for a few weeks, then needing more.
My life was already dominated by my bladder. I couldn’t travel anywhere without knowing where a toilet could be reached every half hour. Then passing urine could be difficult and the stream became weaker. So I stopped traveling by plane and curtailed other forms of transport, always worried a painful infection could develop at any moment.
My frequency continued and I developed UTIs, infrequently at first. Then as I got older they came more frequently, until the last years I had UTIs every month!!
I finally had an infection so terrible no antibiotic would help for more than a day! I became totally bedridden. This was in September 2014 and I’d had so many miserable years of never being able to do anything without considering my bladder. In daily tears, I began researching for help!
I traveled abroad to see a UTI specialist
My husband helped me make the terribly painful journey to a bladder clinic in London run by a wonderful Professor. My doctor had issued me with the best antibiotics he could, plus a catheter. It was agony, you have no idea.
After visiting Professor Malone-Lee at his clinic I improved from the start, but I realised I would need long-term antibiotic treatment. I had finally met a clinician that understood my illness and explained both why I was so ill and how the bladder would be made better. I was shown diagrams and everything was explained in great detail.
My husband helped me make the terribly painful journey to a bladder clinic in London run by a wonderful Professor.
After taking my history and discussing my symptoms, I felt understood. And for the first time in decades, I felt in competent and compassionate hands. The relief was enormous! I was given lots of paperwork to re-read what had just been explained to me and to share with my GP. My questions were answered patiently and the rest of the staff were friendly and open. My treatment was explained along with possible complications to watch out for. I was told to contact the Professor immediately any difficulties developed or if I had the slightest query.
After a rocky start, I started to see progress
Indeed I had some difficulties during treatment and my emails were always answered very promptly, even on occasions at weekends. I have had telephone contact and felt more cared for and safer than at any time in my life while undergoing medical treatment. Sometimes my concerns have been greeted with an informed response within minutes! Amazing dedication.
I introduced a raw fruit and vegetable diet and…finally…I was cured!
Further into my treatment, I felt it might be beneficial to change my diet to include tons of fruit and vegetables. For some months I just ate raw fruit and leaves.
It is my belief that the powerful antibiotics, over an extended period, cleared some long-standing, deep infection in my bladder. Then the diet encouraged much more healthy bacteria to move into the space. My GP says there are papers proving our microbiome can be changed by the food we eat, and the Professor’s papers prove that no urine is sterile!
I have been healthy and antibiotic free for a year now. My new life is one where I forget my bladder. No one should suffer the way I did for so long. There is new science on this and hope. These services for chronic UTI should be made available in every country.
Update: January 2019
Lindyloo has been UTI-free, pain-free and antibiotic-free for over two and a half years. She is convinced improving her diet part way into her treatment helped her recovery. She now feels in control and lives without any concerns about UTIs or bladder pain. She can eat and drink whatever she likes and travel wherever and whenever she pleases. She is thrilled with her new life!
I can eat anything, like fruit, coffee, spicy foods, meat, fish, fizzy drinks, sweets and chocolate. I have no pain at all!