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’.