Olivia’s Chronic UTI Story

Olivia’s Chronic UTI Story

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Olivia is a British woman whose battle with recurrent UTIs started decades ago.  What first began as occasional, seemingly uncomplicated acute UTIs, eventually turned into frequent, severe recurrent attacks.  When her acute attacks tested positive, she would receive the usual UTI treatment.  When the tests failed to identify bacteria, she was abandoned by her doctors.  After jumping through numerous medical hoops, being repeatedly offered derogatory advice and receiving painful surgical procedures that did more harm than good, Olivia eventually found a specialist who knew what was going on.   She was finally diagnosed and treated for a chronic UTI.  Olivia is a ‘long hauler’ and healing from her embedded bladder infection has been a test of endurance.  After more than five years in treatment, she is ecstatic to finally be free from her UTI symptoms and looks forward to the day her treatment is complete.  You can read more about Olivia’s experience here.

 

My UTIs started when I was a teenager

I was born in 1955 (I am 62 years old).  By the time I was 13 I had had my first attack of cystitis. Over the next 25 years I had frequent attacks and I was given varying courses of antibiotics. I would normally respond to the antibiotics, but sometimes I would have to go back to the doctor for another course or a different type of antibiotic before my symptoms fully cleared. I saw a urologist in my thirties who said my urethra needed stretching as my urine wasn’t flowing out properly.  It was assumed urine was probably pooling in my bladder and causing infections. That didn’t work.

I was put on low dose (prophylactic) trimethoprim for about a year which seemed to stave off attacks for that year. Then the cystitis attacks continued about every four months. I was given lots of advice like don’t wear tight jeans, only wear cotton knickers, have a wash after sex which I did painstakingly to no avail. The attacks continued. My husband and I were put off sex by this time as every time we had it, I had an attack of cystitis.

It was very demeaning as I felt they weren’t believing me. I felt dismissed and not taken seriously. Back came the messages about the tight jeans and cotton knickers. I was made to feel it was my fault and that I imagined my symptoms.

 

My recurrent UTIs were much more frequent and severe in my mid-50s

By the time I was 56, I had a series of terrible attacks which seemed to happen every six weeks. I was constantly in the GP’s clinic and they were testing me.  The tests would maybe or maybe not find evidence of bugs in my urine. My symptoms were always the same, regardless of the test result (my main symptom of cystitis was burning when urinating). I would have to cry, cajole and persuade the doctors to give me antibiotics.

It was very demeaning as I felt they weren’t believing me. I felt dismissed and not taken seriously. Back came the messages about the tight jeans and cotton knickers. I was made to feel it was my fault and that I imagined my symptoms.

I was referred to a urogynaecologist at St George’s Hospital, London. She reckoned that I was ‘pooling’. She made me have a test to see whether the water poured into me via a catheter would equal the amount of urine I voided out. The quantity matched, so she concluded I had a bladder prolapse and needed an operation to insert a mesh sling to support my pelvic floor. She told me it would definitely cure my cystitis, but it didn’t. The prolapse operation went disastrously wrong and I am still suffering the effects today.

 

At last I was properly diagnosed with a chronic, embedded UTI

By this time, in desperation, I saw another gynaecologist who repaired the damage the urogynaecologist had done.  This doctor recommended me to Professor James Malone-Lee at the LUTS clinic in London. I was enduring a terrible attack of cystitis when I arrived at the clinic. Again, the GP had told me I didn’t have an infection and they were not able to help. I was abandoned.  Thank God I made it to the Professor’s clinic that day. We had to take a taxi from south to north London as I couldn’t walk anymore because the pain was so intense. My infection was off the Richter scale. The Professor was genuinely horrified by the state I was in.

I was prescribed two lots of antibiotics and within two weeks I was much, much better. The first thing I noticed was the terrible, constant pain inside my bladder lifted almost immediately. I slowly continued to improve over time, but still experienced flares where I had discomfort and burning inside my bladder, like it was on fire. I would endure the flares and they would eventually settle. The intensity of the flares reduced over time and occurred less often.

When I first started treatment, I was prescribed an antibiotic that worked really well, but it gave me gastric upsets. I was changed to Cephalexin and Hiprex (a urinary antiseptic) and that helped, but there was always a lingering flare going on.  Then I was changed to Azithromycin, Co-amoxiclav and Hiprex and this is when I noticed a huge improvement.

I have genuinely felt suicidal with the pain and anxiety this disease causes. When I had my first appointment with Professor Malone-Lee, I was relieved to finally find a doctor who understands this disease.

 

I’m no longer suffering horrendous pain

I have been on treatment for my chronic UTI for five and a half years now. It took about a year to become symptom-free and I remain symptom-free most of the time, except for a slight flare occasionally. Twice I’ve tried to come off my treatment, but within a week my symptoms return. My treatment at the LUTS clinic involves monitoring my white blood cells and epithelial cells (signs of infection) and my symptoms on a graph. I am oscillating down the bottom of the graph.  I’m told this could continue for some time, but it means my infection is slowly flickering out.

I have genuinely felt suicidal with the pain and anxiety this disease causes. When I had my first appointment with Professor Malone-Lee, I was relieved to finally find a doctor who understands this disease.

Since being properly diagnosed and treated, my symptoms have been under control and I have regained my overall health and quality of life. Some people might judge me for how long I’ve been on antibiotics, but I don’t care.  I am no longer suffering horrendous pain.  Now I have much more energy and a feeling of wellness. I am taking more exercise and I am much happier in general.  After not leaving the UK for many years, I can now go on holidays abroad. There have been no side effects. I am confident that I will eventually be able to come off my treatment and remain completely well.

Cutting edge science is coming out now proving that people with so-called IC (Interstitial Cystitis), in fact have a chronic infection of the bladder.  These people, like me, can be cured with long-term antibiotics.  The LUTS clinic here in London is the only clinic in the world to address this disease.  It has been closed to new NHS (public) patient referrals since October 2015 and there is a petition calling for the clinic to be reinstated to its full capacity.  The sooner we get the clinic reopened to new NHS patients, the better it will be for everyone.  I hope soon the medical world will wake up and acknowledge that this most distressing disease, which absolutely wrecks lives, can be cured so simply and cheaply with long-term antibiotics.  Please visit the petition here.

 

Here are my tips

  • Never give up hope of being cured.
  • Don’t listen too much to everyone else’s experiences because everyone is different and what suits one, may not suit another.
  • Don’t worry about being on long-term antibiotics—lots of people are and for the time being it’s probably the only way you are going to get better and have good quality of life.
  • Join one of the Facebook support groups for chronic UTI. They are brilliant and you will no longer feel alone as everyone is very supportive and can help you cope with this disease.

 

Global Facebook Support Groups (click here to enquire about contact information for individual groups):

  • Patients of Professor James Malone-Lee (UK and international), Dr Catriona Anderson (UK), Dr Vik Khullar (UK) and Dr Susie Elneil (UK) – women’s only group and mixed group.
  • Patients of Ruth Kriz (US and international).
  • People in Australia looking for chronic UTI information and support.
  • Parents and grandparents of children with chronic UTI looking for information and support (UK and international).

 

You can read more about online support groups in this ABC news article How social media is connecting people living with illness’

 

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Disclaimer:  Stories or case studies in relation to personal experiences with chronic urinary tract infection, and links to other websites, are included for convenience and information only and do not constitute a recommendation or endorsement by Chronic UTI Australia of materials in those stories or on those linked websites, or any associated entity, product or service. We have not screened, nor conducted background checks or other investigations in relation to those third parties or the information they supply for inclusion on this website.  You should seek assistance from a health care professional when interpreting the materials available on this website and applying them to your individual circumstances. If you have any concerns about your health, consult your general practitioner. This blog is subject to the Chronic UTI Australia website’s Terms of Use.

 

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7 Comments
  • Cass L
    Posted at 12:44h, 01 April

    Olivia thanks so much for writing about your story. It helps to know there are other women with ongoing cystitis who are struggling to be heard and understood. It’s so encouraging to know your treatment is working and you’re almost free from this wretched disease. Best of luck with your ongoing improvement : )

  • Cass L
    Posted at 13:02h, 01 April

    I wish we had a Professor Malone Lee here in Australia and a clinic like yours!

  • Chronic UTI Australia
    Posted at 17:19h, 02 April

    Cass, thanks for your interest in Oliva’s story. We wish we had a Professor Malone-Lee in Australia too! For now, we have a newly released study based on the treatment of 624 women at the LUTS clinic over a 10 year period. The study is being received enthusiastically and is raking as the #1 research paper in the International Urogynecology Journal’s entire history (with over 5,700 downloads in just two weeks). Let’s hope someone in Australia is paying attention! https://link.springer.com/article/10.1007/s00192-018-3569-7

  • Ased Ali (Yorkshire Urology)
    Posted at 09:23h, 08 April

    Glad to hear that Olivia got the right treatment and has been getting better. It’s very unfortunate that she had to go through such a convoluted route to get there.

    I must take issue with one point though which is that Prof Malone is not the only person treating this condition nor is his London clinic the only place to get treated. Urologists in lots of different units all over the country have been treating recurrent and chronic UTI with various effective treatments including extended courses of antibiotics, Methenamine hippurate (Hiprex), vaccines, etc. I myself regularly offer such treatments for both NHS and private patients.

    Indeed, it was a group of urologists (specialising in UTI) that set up the multi-centre ALTAR research trial so that we could look specifically at the efficacy of Methenamine hippurate in recurrent UTI. We also took UTI symptoms as its primary measure rather than culture results (because we know culture results are unreliable). Research work has regularly been done with broth cultures and PCR instead of conventional cultures.

    There are urologists specialising in chronic UTI all over the country. It’s a very common problem. Patients can and should get equally good treatment locally and I would hate for them to feel that they can only get treated in one London clinic.

  • Chronic UTI Australia
    Posted at 17:08h, 08 April

    Hello Dr Ali, thank you very much for your comment. We are also pleased that Olivia is doing so well and now living and enjoying a normal life. In fact, she’s checked in and I can report she’s been out and about and had a great weekend! But unfortunately, her experience of being run through the mill is an extremely common one.

    We are encouraged to hear there are other specialists and clinics across the UK recognising and treating chronic UTI. We agree that chronic UTI is a very common problem. But one of the biggest problems is getting a correct diagnosis — and we know this to be true in the UK also. Our collective patient experience is that when (unreliable) tests fail to identify a pathogen, people with ongoing UTI symptoms are sent down the urology route and, after a process of elimination, are commonly diagnosed with an incurable ‘urinary syndrome’, like IC/PBS, OAB.

    As far as we know, the London LUTS clinic is the only treatment centre that takes an approach to diagnosing chronic UTI that is not reliant on dipsticks and cultures. Their diagnosis gives full attention to microscopy on fresh urine to look for leucocytes and shed epithelial cells (signs of active infection), patient history and symptoms. It’s reassuring to hear that you also take symptoms as a primary measure over culture results. If more practitioners were aware of the frequent failures of current gold standard UTI diagnostic tools, and paid more attention to the symptoms patients were experiencing and describing, we would all be much better off.

    Please let us know if you are aware of any doctors in Australia who have realised the problems with UTI testing and are treating patients based on the symptoms they present. Currently, we are not aware of any. If you have any patients who would like to share their chronic UTI story here on our blog, we would love to hear from them. Thanks again for your input and for respecting and listening to the ‘patient voice’.

  • Margery S
    Posted at 10:48h, 26 September

    Having read your story, the common element of not being listend to is there. Thankfully for me, I have not had surgeries. Pleased that you rare now well.

    I think that my symptions of frequent bladder infections, but no microbes, WBC etc is a possible allergic response to certain food. Leaving out soy, corn, refied white/brown sugar and citrus, and food lcontaining anthocyanines ( the red/purple coloured fruits primarily has also helped.

    My medical people shrug off an allergic response.

    Does anyone else have anything similar ?

  • Chronic UTI Australia
    Posted at 12:54h, 29 September

    Hi Margery, what many of our blog authors share is when their infections are untreated and their bladders are sore and inflamed, certain foods make symptoms worse. An overwhelmingly common experience is that once their infections have been diagnosed and they are receiving proper treatment, they are able to introduce more and more foods as their infections gradually heal. If you read through some of the other blog stories you’ll find this is a common thread between them all – those who are cured can once again eat and drink whatever they like!

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