I believe treating the bladder in isolation is pointless – there is a reason you ended up with a chronic bladder infection –

I experienced my first ever UTI in September 2011 when I was in my early forties. It was treated and gone in two days. Then two years later in 2013, the UTI symptoms returned, which were slightly different to my first one. I would describe them as not a stinging or burning sensation on urinating but constant intense need to pee.

It was horrific. I couldn’t sleep at night, and spent many hours crying in the bathroom. The feelings of pressure, inflammation, a tingly urethra combined with a drippy feeling plus frequency but never urgency, meant I became very tired and grumpy. I was angry, as well as feeling helpless. Not being able to focus on my children was awful as this condition was taking all my energy and thoughts.

As I was training to be a nutritional therapist and had seen success in treating both myself and family for health conditions using natural remedies, I decided to send my sample away to the US for analysis to a laboratory that had been recommended to me. Initial results showed that I had a staph infection and I treated these with natural remedies. However, I then developed an enterococcus infection on a further laboratory test which became the dominant and remaining nuisance!

Staring with conventional treatments and then turning to complementary therapies

Despite my strong belief in using alternative remedies, I started to research specialists treating people for recurrent UTI and came across Professor Malone-Lee. I was living in London at the time and his clinic was very close to where I lived. At my first appointment, I was diagnosed as having an ongoing infection via his symptom checker and then through one sediment culture, the more detailed urine culture he was using at that time. I initially took antibiotics for six weeks but I decided that after this period I wanted to continue treatment using natural alternatives.

Given I have Hashimotos thyroiditis and sadly experienced premature menopause age 39, I wanted to treat my whole body rather than my bladder and I have focused on this through nutritional therapy, supplementation and because of my early menopause, balancing my hormones naturally. I would also advocate mitochrondial therapy and chinese herbs as they have significantly helped me.

I quickly became symptom-free and this has continued. If anything, I have a low bladder capacity. An average wee is 250 mls. I can hold up to 500mls if I want to but feel the need to go around 200mls. I know that unlike many, to have experienced two UTIs so far and getting into early treatment both naturally and synthetically has meant quicker symptom resolution.

Don’t look at the bladder alone – look at your whole body health

Personally, I believe treating the bladder in isolation is pointless, there is a reason you ended up with a chronic bladder infection and I don’t believe it’s just bad luck. It is the culmination of many things, which are not optimal. I would advise the following:

  • Diet is important. If your gut microbiome is unhealthy it weakens the immune system leading to inflammation and infection through the body. It’s often said that the gut is your “second brain”. Look to work with a nutritionist and if needs be, submit a stool sample for analysis to check for parasites or an overgrowth of bad bacteria in the gut. Supplementation and diet can help bring things back into balance. This will help your immune system to fight infections through the body.
  • Our circadian rhythms are also important. Think of circadian rhythm as the body’s metronome, if this is out, everything on a biochemical level will be and that is what leads to chronic health issues.
  • I would advise minimising blue light exposure – none in the evening – so put that tablet or phone down. I go to bed at 9pm and wakeup/get up 5.30/6am. I take this opportunity to get outside and walk or meditate.
  • Get outside in the sun whenever possible, practise barefoot grounding, drink clean water and meditate.
  • Most importantly, your health is your responsibility, do not look to others or rely on others to fix you, no one else is more invested in you than you.

Find out about UK specialists in chronic UTI

Read more about Professor James Malone-Lee

18 months on and I am a very different person, I’m not yet 100% but I am 100% better than I was –

I’m sure I’m very like many others who have suffered from recurrent poorly treated or untreated UTI’s over many years leading to a chronic embedded infection.

Life with cystitis – from childhood to adulthood

When I was 13 I suffered from my first bout of cystitis, I was diagnosed, given antibiotics and sent on my way. From the age of 13 to 22, I had UTI symptoms every month or so, burning, urgency and frequency. If something showed up on the dipstick I’d get a course of antibiotics and if it didn’t I’d be told to drink cranberry juice and avoid acidic food and drink.

In my mid twenties my symptoms changed to just have discomfort, frequency and urgency, no burning and I was avoiding sex at all costs. I decided to try and sort it out altogether so I spoke to the doctors, they diagnosed me with honeymoon cystitis and prescribed prophylactic trimethoprim a very low dose to be taken each time after sex. This worked for a while, I’d still get pain, frequency and urgency every time I had sex but these would fade after about a 7-10 days each time.

A change of doctors led to my new practice refusing to prescribe prophylactic antibiotics, I had to prove each time I was ill that I had a UTI but the tests never showed a UTI. Over the next few years I had UTI symptoms every time I had sex but my doctors wouldn’t believe that it was caused by sex and said it must be a coincidence! I was left being told it was all in my head, no professional would believe me or listen to what I had to say, even though I had been suffering with this for many, many years and knew my own body. At this point, I had lost all hope, by avoiding sex I wasn’t ill unless I exercised, so I stopped that too and haven’t drunk wine for around 25 years. This all affected my mental health and wellbeing, I just wanted to be “normal”.

The dipsticks and urine analysis said no infection thus no referral to see a specialist

I then met my husband and everything was great except, yep you guessed it sex. We went for years with me avoiding it, leading to the both of us being frustrated and eventually I went back to the doctors to try and resolve it. Again, I was told unless a UTI showed up on the dipstick they wouldn’t treat me or refer me to a urologist. To be honest at that point I just gave up, I had to accept that if I wanted to be in a loving relationship, I would have to be ill for 7-10 days each time after sex, it didn’t really make it very appealing.

Around two and a half years ago when I was in my mid-forties, I got the same old feelings after sex, namely urgency, frequency and discomfort. I went to the doctors, no infection showing, they sent it off to the lab, no infection showing and so would not give me antibiotics. This went on for weeks with the doctors refusing treatment, I remember sitting in the doctor’s office sobbing and begging them to take notice of my symptoms not their test results but they wouldn’t. By this time I had constant 24/7 feelings of urgency and frequency I couldn’t concentrate on anything nor sit down, go in a car or go out I was at absolute rock bottom and felt life wasn’t worth living anymore. It was one of the most desperate, isolating experiences of my life.

Guess what – IC when finally in front of someone

I went back to the doctors and asked to be referred privately to a specialist and they agreed to refer me to a urologist, they wouldn’t refer on the NHS. I met privately with the urologist, he prescribed a two week course of antibiotics and I saw a very slight improvement but I still had constant UTI symptoms, other research suggested that antihistamines could help and so I started taking them and saw a tiny impact on my symptoms. I went back to the urologist and he felt that the antibiotics should have worked after a two week course and so didn’t believe it was an infection. At that point, he said I needed cystoscopy to check my bladder. I was terrified but agreed to it as I couldn’t see any other option and was desperate to stop these awful all consuming feelings. After my cystoscopy, I was told that everything was normal and he diagnosed me with painful bladder syndrome (PBS/IC). He prescribed me 10mg of amitriptyline, I went back after a couple of weeks with a very small improvement, that convinced him that I had PBS and I was told I had to learn to live with the symptoms and continue to take amitriptyline.

Thank goodness for my own research

In the meantime I had been doing my own research to find out how people learn to live with this awful condition and came across information on Professor Malone-Lee. It all made sense to me, all this time I had been convinced that I had an untreated UTI as I know my own body, but no one else would believe me, finding this information was a total turning point.

At my first appointment around 18 months ago, after lots of questions, he looked at my urine under the microscope and declared “you have a rip-roaring infection which I guarantee you have had for more than two years”. He was the first professional that believed me, didn’t tell me it was in my head and told me he would cure me. I was in tears and had some hope that at last, I could be cured.

I’m 100% better from when I first started treatment with a cUTI specialist

18 months on and I am a very different person, I’m not yet 100% but I am 100% better than I was when I first met Prof. I went from having symptoms 24/7, 365 days a year to no longer having daily or even weekly symptoms now, I have very occasional flares and sex is still an issue but the problems last about five days now, so they are much improved.

One thing that has really helped me during treatment is a traffic light system for how I feel:

  • Red = can’t live with the symptoms
  • Amber = if I had to I could live with the symptoms
  • Green = normal and the majority of my days are now green days

I am very lucky that throughout this whole period my husband has been so very supportive, without him I wouldn’t be where I am today, being able to talk things through is a great help.

I am also so grateful for the Facebook support groups set up specifically for those with chronic UTI. Talking through things with people that really understand how you feel has been a lifeline. This illness makes you feel totally isolated and withdrawn so having a group of people who know exactly how you feel is important, you can call on their knowledge of symptoms and get reassurance that you are on the right path.

Finally, I would say don’t judge yourself against others progress, it really is an individual long term approach but you will see small improvements over time.

Find out about UK specialists in chronic UTI

Read more about Professor James Malone-Lee

Where to get support

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 –

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.

Why don’t the current tests and treatment for a UTI work?

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.

Read more about anxiety and stress and how they affect you both physically and emotionally

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.

In April of 2020 I managed to get a job at Guide Dogs for the Blind as an advice line coordinator for children and young people. This was originally meant to be in the office but due to coronavirus it has been remote working. I started part time doing three days a week and was terrified I wouldn’t cope. I managed fine and increased my hours to full time after Christmas and was given a permanent working from home contract which was ideal for me.
In January 2021, after 9 months in the organisation (this was my first ever job because of this condition holding me back), I was promoted to a supervisor role which is also permanently working from home and I am now earning a good wage after being used to claiming sickness benefits my entire adult life and I am working in the comfort of my own home. Something I thought was going to be impossible for me to attain as prior to my counselling course I had no experience and no qualifications past my a levels.
I have been terrified at every step I took as to if I could cope, but I surprised myself and I finally got where I need to be. I still have chronic uti and am not 100% cured but I have now finally taken everything back that it took from me. Chronic uti doesn’t have to stop you from being successful. I had so many years spent in fear worrying about my future and how I would ever get anywhere. I took baby steps and I am finally where I aimed to be after two years of hard work and adding a little bit at a time.
I hope this gives someone hope, as this was something I worried about so much up until I got my first job last year. Never ever give up because things will get better, i promise! If they did for me they can for anyone.

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.

Find a UK Chronic UTI specialist

Read more about Dr Catriona Anderson

Read more about Professor James Malone-Lee

Find support groups