I began having UTIs after becoming sexually active at 17. In fact I’d never heard of cystitis until I experienced my first one. I was really quite frightened as my symptoms were constantly needing the toilet and nothing would come out with lots of stinging and burning and I simply did not know what to do. I remember distinctly thinking this is the worst pain I have ever experienced. My dad went with me to the GP surgery and during the appointment I had to pee into the sample pot provided (that was fun given how they are not designed for women). I remember being in the doctor’s office when the dipstick came up positive, I said ‘Thank God!’ and she said ‘I’ve never heard someone say that before’. I was given three days of Trimethoprim and symptoms settled.
Sex was a trigger
To be blunt every time I had sex an acute UTI would flare up. My dipsticks always tested positive and I was given short course antibiotics, Trimethoprim until it stopped working and then Nitrofurantoin that I took for three to five days. However, one day during the summer holidays in my first year at university, symptoms just didn’t go away, the antibiotics stopped working. I was left with bladder awareness, urethral pain and back pain and something not feeling right. I had become used to acute UTIs at this point from all the recurrent UTIs I had previously suffered from, so I knew what it felt like, and I knew this was similar but not the same. My gut feeling was that it wasn’t a normal UTI. My pain was a lot less sharp than an acute UTI but the constant discomfort was still unbearable and when the dipsticks stopped showing white blood cells (leukocytes), protein, nitrites or blood in the urine, all markers GPs use to diagnose a UTI, I knew I had a bigger more overwhelming problem.
I was 19 years old when my UTI became chronic and I had just finished my first year at university studying broadcast journalism. I had to drop out of university, I lost all my friends because I couldn’t go out anymore, I lost my career plans, I thought my life was over at 19. I lost my freedom. I felt like life was going on and I was just watching the world go by with me not a part of it. I thought I would never meet a partner and was worried sick how I could live without being able to work. I struggled with severe mental health issues including anxiety, depression and suicidal thoughts.
I was also battling really painful periods which I found really exacerbated my bladder symptoms. Thinking back over the last few years, one thing I did pick up on was my ongoing use of tampons when I had acute UTIs. I now know that bacteria can transfer from the anus to the vagina and urethral opening because of the tampon string and I do wonder whether this helped to contribute to things alongside each time I had sex.
I gave up on my GP but wasn’t prepared for the experience at my local hospital
At this point, I decided that I need to see someone other than my GP for further investigations, things weren’t right and I simply couldn’t face a life with ongoing bladder problems. I must admit I found my GP surgery utterly clueless, insensitive, arrogant and extremely unsupportive each time I had to see them about my bladder to the point they hindered my treatment by refusing antibiotics and dismissed anything I tried to explain to them. Their attitude didn’t help the ongoing anxiety I was struggling with, it simply made things worse.
Finally after finding the courage to confront them, my GP referred me to a urologist at the local hospital. Over the period of three years I had a cystoscopy, laparoscopy and ultrasound scans both internally and externally. I must have seen six specialists and yet each time I was told, there was nothing wrong with my bladder and at best they could only diagnose me with Painful Bladder Syndrome or Interstitial Cystitis. Because of my painful periods they considered that endometriosis could be contributing to my issues but at the time, nothing was found to confirm this. I tried low-dose antibiotics, amitriptyline, bladder instills, pregabalin and nerve block injections, none of which touched my symptoms and I was becoming increasingly reliant on high dose controlled painkillers to help. The specialists I saw seemed more than happy to let a 19 year old girl leave their consultation with no hope and expected me to put up with it. Two specialists called me a mystery, which to a young girl was terrifying and to this day I am disgusted with the treatment I received from these ‘experts’. I couldn’t believe that the bladder would inflame itself for no reason, the body is way too smart for that and mine had started with a UTI.
Finding support online
I was in the car with my Dad one day and I distinctly remember saying to him ‘Dad, I’m the only person in the world with this aren’t I’. That is how I truly felt. He told me ‘No, absolutely not’. I hadn’t wanted to reach out and join IC social media support groups because it felt like I was making it more real by doing this, but I decided I needed to reach out and find others. I joined the Chronic UTI Women’s support group on Facebook back in 2012 when it had only 30 members and at the time was an IC support group (though much more open and accepting than others, as the focus was on finding different treatments). I started to actively post and spent all my time researching, I was so desperate.
After a while, the focus of the group changed and those people still active in the group started to post about bacterial bladder biofilm infections and intracellular UTIs.
Chronic UTI specialists who listened
After about a year or so, my father and I found an answer with a couple of members who started to post about Dr Catriona Anderson at Focus Medical Clinic. We began to learn more and more about chronic UTI, bacterial biofilms and how the bacteria in a UTI have the ability to embed themselves into the bladder wall making them resistant to antibiotics.
I realised all the science made sense, having read research published by Scott Hultgren, Alan Wolfe and Linda Brubaker, all researchers and clinicians based in the US looking at these types of infections and the urinary microbiome. I booked an appointment with Dr Anderson, who made sense of everything for the first time.
Her knowledge of bacteria was amazing; how they affect the bladder, even the symptoms I described meant that she was able to explain how certain bacterial families lead to these symptoms.
More importantly, the fact that she spent well over 1.5 hours with me at my first and subsequent appointments made me feel that I was working with someone who wanted to educate me, meet me half way to help treat me and not just get me out of her consulting rooms after 30 minutes and present me with a large bill. After being told by top urologists ‘I was a mystery’ and ‘go back to uni and you will forget about it’, this was so refreshing and reassuring.
After my appointment, we organised a broth culture. Dr Anderson explained that a broth culture more accurately represents the growing conditions of bacteria and or fungi. Her lab place the urine into a Trypticase Soy Broth (TSB) for 3-6 days instead of being placed directly onto an agar plate or petri dish for incubation. One critical point is that the temperature for the broth mixture is closely controlled which allows the microbes in the urine to evolve as they would in the body. The urine is incubated at 35 degrees celsius until growth appears. If no growth is found in three days the sample is left for up to another three days. After the broth process the bacteria are placed onto agar plates and incubated again at 35 degrees celsius for about 24 hours or until significant bacteria and/or fungal anaerobes emerge on the plate. Once the infecting bacteria are identified, an ABST (Antibiotic Sensitivity Test) on them is carried out so that she can see which antibiotics are sensitive or resistant to the bacteria identified.
After I had submitted my first broth culture, Dr Anderson followed up with me to advise she had found the following bacteria, Klebsiella, Proteus, E-coli, Enterococcus, Staphylococcus aureus and Staphylococcus epidermis in my urine and she decided to start me on the antibiotic Cephalexin for a month. We would do a broth culture every other month and I would try the antibiotic suggested from the results for a month to see if I had any relief in symptoms, though for me this didn’t happen. We tried a few different combinations as well as some natural supplements such as oil of oregano, D-mannose powder and colloidal silver.
Unfortunately just over a year into treatment, Dr Anderson had to close her clinic for a couple of years and wasn’t able to continue to clinically support me. This was really difficult for me as we were working so hard together to try to get on top of my symptoms but the Chronic UTI support group I helped to admin also contained members not only in treatment with Dr Anderson but also Professor James Malone-Lee. At the time, his NHS clinic was not open to new patients and therefore I booked an appointment with him in the winter of 2017 to see him privately. When a patient with Dr Anderson, I had only taken antibiotics for a month or so each time as I was so worried about side effects but in seeing Prof ML, I realised that I had to give the medication longer to see if things would improve. This was a big step for me and having the ability to connect with others in treatment with Prof M-L meant I could see how people were doing in their treatment regimes after several months of treatment on the same unchanged antibiotic regime.
I also had to change my understanding from a broth culture for bacterial identification that would help to guide my treatment alongside my symptoms to the urine microscopy that Prof uses. If you don’t know about this, your fresh urine sample is examined under a microscope in the clinic. The urine microscopy measures levels of epithelial cells and white blood cells. It is different to a urine culture and will not identify bacteria or antibiotic sensitivities.
White blood cells in the urine are indicative of inflammation in the bladder and/or urethra – this is part of your immune system’s response to a bacterial infection. This same system also sheds infected bladder or urethral epithelial cells to prevent the infection becoming established on the walls of the bladder or urethra. The clinic treats based on a patient’s symptoms and this urine analysis following over 10 years of clinical and research study into chronic lower urinary tract symptoms and infections.
I remember my first appointment at his clinic. It was a long day and my boyfriend at the time and I had got up very early to drive to London, worried about finding a parking space and the traffic. Prof was exactly the person that everyone had described to me, kind, caring and willing to listen to my infection history. He looked at my urine sample under his microscope and even thought my counts were 0/0, he told me that I did have an infection going by my symptom description of a constant dull ache and daily awareness in my bladder. I was put on Cephalexin 1g twice a day to start with and also Hiprex, a urinary antiseptic. Over the next year or so I made several trips down to London to see Prof and have my urine examined. I will admit he had to swap me to several different different antibiotics and eventually we determined that a combination of two antibiotics was necessary in my case alongside Hiprex. This can be common for some where an infection is multi-bacterial, needing the support of two sets of antibiotics to cover the bugs causing the symptoms. I knew from my broth cultures with Dr Anderson that I had more than one bacteria in my urine so this made sense. Once I was on two antibiotics alongside the Hiprex, things started to bite in terms of treatment.
I had to stop the high dose antibiotics in 2019 for for a few months because I was developing problems with my stomach and they were causing me lots of nausea. This obviously worried me being off antibiotics for this period of time but interestingly whilst I had flares, they weren’t as extreme as I had previously had. In the support groups I helped to run, I found that people who were experiencing the same nausea and gastric issues managed this by putting the antibiotics into clear gelatine gastric resistant capsules which you can purchase on Amazon. Once I found out about these capsules I restarted the antibiotics and since then have had no problems.
One thing that I did notice was that when I started with Prof I had no epithelial cells at all which suggests my body was not fighting the infection. As soon as I started treatment I began to see epithelial cells but I should add that my white blood cell count has always been 0 or very low and this continues. I know this will be a slow process to clear the infection given how the bacteria embed into the walls of the bladder but with epithelial cells now showing up on my counts, I can see that my body is fighting the infection by shedding the infected cells on the surface of the bladder wall and hopefully this will continue so that eventually even the deepest infected cells will clear.
Another strand to my treatment – a Rife machine
One area I have always been interested in is complementary medicine – something that Dr Anderson uses in her practice and we used during my treatment with her. Whilst at home and having time to look at different online groups, I came across Rife machines. They are a machine that treats based on physics and the scientific fact that everything in the universe is an electrical frequency. If you omit a pathogens frequency with a generator, it causes that pathogen to shatter and die. They aren’t cheap but the results people have been seeing in using them for different conditions has been substantive and after chatting through this with my Dad, we decided to purchase one. I have now been intensively using a Rife machine for several years which I believe works and has contributed to me being better. It was able to identify several bacteria that were found in broth cultures with Dr Anderson and also picked up the inflammation in my bladder during biofeedback scans. When treating with it, it caused huge chunks of epithelial cells to come out in my urine, I had never seen anything like it before and it was definitely down to the Rife machine, as we tested this by coming on and off the treatment regime prescribed by Professor Malone-Lee and monitoring any changes.
Stress – a hidden block to healing
I am going to be honest and say that my relationship at that time with my boyfriend of several years was very difficult and looking back I’m not sure it helped when I was trying to heal. I was anxious enough as it was trying to manage my infection, battling depression because I simply couldn’t see a way out of the endless cycle of antibiotics and pain and also not able to contemplate either going back to college or trying to find a job. Sex was really difficult for us and whilst he was very patient, it wasn’t an equal relationship. My lack of confidence about life meant I wasn’t as strong as I am now.
In 2018 my boyfriend left me and I hit rock bottom, finding myself in a desperate place. I know now that the emotional stress of this relationship and subsequent break-up helped to contribute to my ongoing symptoms – the bacteria really do respond to stress. I’m so grateful to my family for all the love and support they gave me during this time and my beloved cat, Harry. When things seemed bleak, they were there.
However during 2018, despite being close to giving up before I had even started, I made the decision to began to study at college again on a part time basis. I knew from such a low base I had to do something to help myself rather than relying on others. From there things got better and better. I met a wonderful, kind man later that year who I am now in a relationship with and he treats me like a princess. He is understanding and patient and he turned things around for me emotionally. I was terrified of dating with this condition and did not know how to tell someone about my condition and how it could affect sex. I thought to myself ‘what young man would want to be with me with this condition when they could be with anyone?’. When I told him he told me if anything it made him like me more that I was so honest with him and felt so comfortable to tell him. In 2019 I continued my studies and I began volunteering as a Childline counsellor. Initially I was terrified of these commitments and worried I would not cope with them, but that was not the case at all. I found that I managed to cope really well and I went from strength to strength. I began to be able to make plans without considering my bladder.
To help with symptoms, I kept using my Rife machine and continued to take the antibiotic regime prescribed by Prof. None of this interrupted my ability to be able to carry on my studies and I found that my own confidence had grown, meaning I could overcome my fears about going out, socialising with friends and could actually start thinking about the future.
So where am I now? Better, much better
My symptoms have lessened very gradually over the last few years and the antibiotic regime I take, Nitrofurantoin and Pivmecillinam plus Hiprex now keep things under control. I won’t deny that in my search to get well, it has cost both me and my family a lot of money. It shouldn’t be this way and I’ll continue to fight for myself and others so that the diagnostic and treatment methods used by Chronic UTI specialists are available to everyone, free at the point of care in the UK. I now have a referral to the NHS LUTS clinic at the Whittington hospital run by Dr Rajvinder Khasriya who uses the same diagnostic and treatment protocols as Professor Malone-Lee (she trained under him and has co-authored many of his research papers). With referral, my boyfriend and I can now save for a deposit for our first house.
I distinctly remember seven years or so ago being awake at night feeling like my bladder was being blown up like a balloon. I also remember being terrified to urinate because the pain was so bad afterwards. I have been with Professor M-L for three years and to be honest, the way I can notice how much I have improved is by what I can do with my life now. Everything this illness took from me, I have taken back. I live my life again, I feel normal, I don’t consider my bladder before making plans. I feel normal most of the time and feel true happiness.
I still have general bladder awareness and occasional back pain but I would say I am 90% better than I was. The difference in my life is incredible. I was bed bound for seven years, had no job, couldn’t study, had very few friends, reliant on controlled pain medication. I never left the house because I suffered from crippling anxiety so I couldn’t go on holiday. I couldn’t go to the cinema, go swimming or do anything leisure wise as I had to worry about my bladder first. I had nothing going for me apart from my cat. in 2019 I travelled to three different countries and began drinking alcohol again. I’ve made lots of new friends and made loads of plans with them, without thinking twice about my bladder. In 2020 I secured my first job, completed my level 3 in counselling skills and have been accepted onto my level 5 diploma after which I will become a fully qualified counsellor. The controlled pain meds are a thing of the past.
I had planned to take my dream trip to Florida which was booked and had to be cancelled due to coronavirus but I know that I can now travel and make these type of plans to places I thought I’d never make it to. Instead I had two amazing weeks on the island of Mallorca with Alex. To top it all I returned home and didn’t flare or need to do anything to help my bladder.
I am excited, and I am not thinking twice about my bladder. I have a wonderful partner of two years who is supportive and understanding and we have a happy, healthy and loving relationship. We are about to buy our first home now I am able to work and can contribute towards our mortgage and our future. All these things I never thought I’d have and I believed this for so long. For seven years. Now I have a life, I am happy, but I have been to the darkest places over the years. I am so glad I hung in there even though at times I had no hope. If I hadn’t, I wouldn’t be experiencing all these things now that make me so happy and grateful to be alive.
In closing, I’ve added the following points to help and encourage anyone reading my story.
- Never give up and never lose hope. There are positives in every situation if you look hard enough, even in getting this condition. It ruined my life, and pushed me to my limit, but it gave me strength, resilience, bravery, empathy, understanding and it made me grateful for what I have.
- Read, read and read some more to wrap your head around this condition and how it works. This understanding will help you to calm your mind when things get tough.
- Join a social media support group that focuses on Chronic UTI but be prepared to take breaks from it when posts seem overwhelming. It’s too easy to spend all day responding to every post and making comparisons to your own situation. I have found that stepping back and meeting my friends or family in “real time” has really helped.
- Listen to music you love to silence any thoughts that make you feel panicked or worried but also let yourself feel these feelings and then let them go.
- It can take a long time to get better, but the most important thing is that scientifically and clinically it can happen. At one time people were diagnosed with IC and that was it. When I first got this condition there was nothing online to support people like there is now. It turns out this ‘incurable condition’ is actually treatable and you can get well.
- If your current regime isn’t helping, remember there are new treatments being worked on and there are always alternatives to try. Often there is an underlying root cause as to why you have developed a chronic UTI – don’t just fix the infection, fix all of you by working with holistic practitioners and looking at your own life situation. You alone are responsible for your own health.
- Never give up on your life because it is too precious and you will feel happiness again, even though you probably won’t believe it right now. I used to read success stories and feel so sad, feel like it would never be me. I never thought I’d be here writing this success story out, but here I am! NEVER GIVE UP. You are worth more than that and there is ALWAYS hope.