01 Oct America’s Chronic UTI StoryReading Time: 10 minutes
In 2008 America went to the doctor for a urinary tract infection (UTI). She was treated, but her infection came back after each course of treatment. This went on for several months. Her confused doctor referred her to a urologist, where she was diagnosed at the first appointment with interstitial cystitis (IC). For five years she was treated with a cocktail of medication to help manage her symptoms, but this did little more than take the edge of her pain and caused woeful side effects. America chanced upon information about a UTI specialist in the United Kingdom who specifically treats people like her who have been diagnosed with urinary syndromes and recurrent UTIs. America decided she had nothing to lose and set off across the Atlantic for a consultation. With the approval of her new doctor, she stopped her IC medication and started her new treatment. Ten months in, she claims to feel the best she has in 10 years. She still has some symptoms, but only rarely notices them. After a decade of pain, despair and depression, fighting off symptoms and dealing with significant medication side-effects, she now feels she can refocus on her work, her relationship with her husband and children and her future. America’s thrilled to have her life back on track.
A UTI kicked off 10 years of pain and misery
I am 38 years old and a working mother of two children living in the United States. My story begins like this: In 2008 I got a really bad UTI. It was so bad that no pee would come out after trying at least 20 times, but the urgency and the burning was so intense that I could not sleep, nor sit, or focus on anything else. I went to my family doctor who diagnosed me with a UTI via a dipstick urine test and put me on a round of seven-day antibiotics. I felt great two days later and continued the medication until it was finished. I felt better, but three weeks later the infection came back. I went back to my doctor, who tested me again via a dipstick urine test. He said I had another UTI. He put me on another course of seven-day antibiotics. Again, I felt better. A month later, I was in pain again. I went back to my doctor a third time. He said, “I can no longer treat this, you have to go see a urologist to see what else is going on because the two courses of antibiotics should have worked”.
I was referred to a urologist who did a cystoscopy (without sedation) at my first visit. A cystoscopy is where they insert a tube with a camera at the end, via your urethra, to look inside your bladder. It was extremely painful. Once the procedure was done, he told me I had interstitial cystitis (IC). I asked what that was and he said it was an incurable bladder disease that causes pain compared to the pain a cancer patient feels, blood in the urine, lesions on the bladder that bleed and constant burning and urgency. I asked what the treatment was. He said “NONE”.
I went back to my doctor a third time. He said, “I can no longer treat this, you have to go see a urologist to see what else is going on because the two courses of antibiotics should have worked
I went home and researched treatment options for interstitial cystitis
I left his office in shock and immediately started researching what he told me I had. I couldn’t find much about IC. From 2008 to 2010 I just suffered. I dealt with the constant fire in my bladder daily. Since I was told there was no treatment, I would take over-the-counter AZO to help with my symptoms and I would just cry all the time. I was diagnosed with depression in 2010. I was so sad that my life would be so painful for the rest of my life.
I started Googling for interstitial cystitis specialists in my state. I found one!! Just one! I went to see the specialist and they were horrible. The specialist made me feel like I was crazy and talked down to me about my symptoms. I never went back.
In 2011 I got remarried and was put on my husband’s health insurance. The insurance company is known to have some of the best doctors on the planet! I decided to call the urology department and make an appointment just to see what they would tell me. I met with a doctor. She was god-sent. She was so kind and understanding. She put me on a cocktail of four medications to be taken three times a day to deal with the symptoms of IC. Since there is no cure, all she could do was treat me to make me comfortable enough to go to work and function as a mother and wife. I saw her for five years—taking the same medications over and over for five years. My medication was called Elmiron. The main side effect for me was hair loss. Needless to say, my husband was driven crazy by the amount of hair I left all over the house.
In 2016 my insurance was changed, so I had to find a new urologist. I was freaking out! Who would understand IC as my last doctor had? Would they know how to treat me?
I Googled another doctor in my area. He was very nice and wanted to do another cystoscopy to better understand my stage of IC. Since I remembered how painful the first cystoscopy was in 2008, I asked to be sedated this time while they did the procedure. Once I woke, he explained my bladder had classic signs of IC. I had lesions all over my bladder that were inflamed and bleeding and redness all over. He said I could do the following:
- Continue taking the medications my previous doctor was treating me with.
- Put Botox shots in my bladder to numb the nerves to reduce my urgency and frequency.
- Have a procedure to put a device called an Interstim in my spine that would send a frequency to the nerves in my bladder to lessen the symptoms.
- Do medication instillations via self-catheterisation to relieve the symptoms.
I chose the first option. I was NOT going to do any of the other things because it all terrified me. Since 2016 I have been on my cocktail of medications again four times a day.
What is an embedded UTI and could I have this?
My life since 2008 was horrible. Having a bladder that feels like someone is pouring acid on it every single day is mentally, emotionally and physically exhausting. Because of my condition, I was now also suffering depression, anxiety, PTSD, agoraphobia and low self-esteem. Marital issues followed because since I remarried, I would always worry that my husband would tire of my health issues and leave me or cheat on me since my symptoms were affected a lot by sexual activity. I would hurt for days after intercourse which would make me mentally dread it and, of course, caused paranoia around my relationship.
Randomly, on a support group in early November 2018, I stumbled across a post from a woman talking about how she had been treated by a UTI specialist in the United Kingdom and her IC was cured. I was like “What?!!?? Who is this man??????!!!!” I started Googling like crazy—for a whole month! I read article after article on online, then I read post after post on social media. There were so many women who had seen this specialist and he had told them “You don’t have interstitial cystitis; you have an embedded UTI”. So, then I started researching embedded UTI and his name kept popping up as well. Embedded UTI meant that a UTI was so bad that it needed a longer course of antibiotics because it was so deep in the bladder wall—a seven-day course was never going to cure it. In my heart I always felt that the initial UTI from 2008 was never dealt with correctly. I asked a lot of ladies in the online groups about their experience with Dr. Malone-Lee’s treatment and they all raved about it. All the women I spoke to were from the United Kingdom.
In early December I decided to talk to my husband about traveling across the world to see this doctor. My husband asked, “Why all the way there?” The reasons are because in the United States, the standard test for a UTI is a dipstick test [and culture]. If you have an embedded UTI, those tests will often come back negative. Urine needs to be either tested fresh immediately under a microscope or cultured for a longer time than standard testing used in the United States. If I handed my urine off to Dr. Malone-Lee, he could possibly tell me I have IC or that I don’t—it was a 50/50 chance and I was prepared to take it. I mean, why wouldn’t I? No one in the United States looks at urine under a microscope immediately after peeing that I found. Such a simple thing could help cure me, but I would have to travel all the way to London to do it. My husband said, “Do it…if this man can possibly give you some quality of life back, then it’s worth it.”
I started a funding page for the $4,000 I needed to travel to the United Kingdom. I only raised enough to pay for my hotel stay and I was grateful. Because I am not rich, I put it on a credit card and booked my trip.
In my heart I always felt that the initial UTI from 2008 was never dealt with correctly.
I flew across the Atlantic to see a chronic UTI specialist
On January 8, 2019, I saw Professor Malone-Lee. My 16-year-old daughter went with me for support. On arrival, the receptionist gave me a urine sample tube so that I could go pee and have a sample ready for the Professor. I was then called into his office (by him) and he immediately took my sample and placed some drops onto a microscope slide. Not even 10 seconds had gone when he said “OK, I see a diagnosis already…”. He then said, “I am going to be silent while I continue to look at the slide, so bear with me”. He had a counter in each hand and was clicking them over and over. While looking at the slide he would say “wow”, “oh my god”, “you poor thing”, “you have been in lots of pain haven’t you”, “how have you been living like this?”
He finished and said, “You definitely have an embedded urinary tract infection. I see so many white blood cells and epithelial cells in your urine, which means infection. You have probably had this infection for 10 years and it is deep in your bladder. I am going to put you on a long course of antibiotics. You will have to be on them for around a year. I am also putting you on a medication called Hiprex. That is an antiseptic for the bladder.” He then said the words I was praying for, “This is NOT interstitial cystitis. We are going to make you better”. I immediately put my hands to my face and started crying.
He came around to where I was sitting to show me some slides. Each slide shows the bladder and the layers of the bladder lining. They show how initially the bacteria shows itself, then multiply over and over, then reinfect, getting deeper and deeper into the layers of cells that line the bladder.
He gave me a prescription for eight weeks’ worth of antibiotics and Hiprex and scheduled a follow-up phone appointment. I left there in shock. I had so many emotions. I was shocked, relieved, mad, happy, excited, all at the same time. I was mad that the past 10 years I have been dealing with something that could have been cured. I was mad that I almost gave up. I was mad that the past 10 years have been a living hell. I was ‘the girl on fire’—burning inside all day, every day. If a doctor in the United States would have tested and prescribed treatment for me this way at the start, I could have gotten better a long time ago. I called my husband. He was ecstatic and asked why I didn’t sound happy. I told him that I just could not process all the information and that I had too many feelings all at once.
I started treatment for a chronic UTI and my bladder pain started to ease
I began taking both medications prescribed. The first couple of weeks I was in a constant flare. I cried a lot from the pain. I could barely sit. I had to leave work one day and call out the next. The bacteria were being disrupted in my bladder and it was causing me so much pain. But after two weeks, I started to feel better. I only noticed my bladder now about 20 percent of the time. Following this, I had my ups and downs. Some days I didn’t feel my bladder at all. Before I started antibiotic treatment, as I sat at my desk working I would be on fire 100 percent of the time. Some days I still do have intense burning, but I attribute that to everything trying to heal. I have more good days than bad, and that is a major improvement from where I was before my appointment in London.
I had sought help and support from online IC support groups over many years. I have read stories about women who ended their lives because of the inconceivable pain they suffered from ‘IC’. Some have marital issues because their partner doesn’t understand why they can’t have intercourse as often as they would like. Their lives are torn apart by a disease that keeps them from being able to enjoy life because of being in constant pain. Their kids suffer because their mother is not present.
I accept some of those women may have IC. But they don’t know 100 percent because their doctors are basing the diagnosis on a test that is proven to be inaccurate. The dipstick test does not provide accurate results of what exactly is floating in their bladder. I’ve discovered the only way to know for sure if you have IC or an embedded UTI is by doing better testing via microscope, broth cultures or DNA testing.
I wish that instead of just telling me over and over that there was no cure for what I had, and that I just had to live with the constant pain, I would have had more choices in finding out the root of my problem. It’s not good enough to dope me up with a cocktail of medications that caused hair loss, sleepiness while working, dizziness and grogginess, just to allow me to function. If a dipstick test keeps coming up negative and the patient continues to have symptoms, then maybe we should say, “let’s find a way to look at the urine more deeply because SOMETHING has to be causing these symptoms”.
After two weeks, I started to feel better. I only noticed my bladder now about 20 percent of the time. Following this, I had my ups and downs. Some days, I didn’t feel my bladder at all. Before I started antibiotic treatment, as I sat at my desk working, I would be on fire 100 percent of the time.
Where my life is now
I have been in treatment for ten months now (October 2019). I am feeling better than I have in 10 years! Once I settled into my treatment, I gradually started having more good days than bad days. Recently I had an upset with a three-week flare for the first time since my treatment started, so my medication was adjusted and I am feeling better again.