Accessing Chronic UTI Treatment - five women share their experience - Chronic UTI Australia
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Accessing Chronic UTI Treatment – five women share their experience

Accessing Chronic UTI Treatment – five women share their experience

Reading Time: 23 minutes

To be diagnosed with a chronic UTI in Australia is no mean feat.  Chronic UTI is a largely unrecognised and misunderstood condition.  It is common for people with these chronic infections (who are predominantly women) to be referred through the medical system—sometimes for years and even decades.  They see numerous specialists and have multiple tests, often walking away with a urinary syndrome diagnosis.  Ongoing symptoms and pain management is usually the best that can be offered.  For these people, the future can be bleak.  This month we talk to five Australian women who have long-suffering UTI histories of between one and 35 years.  Through their perseverance, each of these women found their way off the medical merry-go-round and were finally diagnosed and properly treated for a chronic UTI.  Read more to find out how they reclaimed their lives and found their way back to health.

 

Sally

Can you explain how long had you’ve been dealing with a chronic UTI and to what extent your condition impacted your life before treatment?
I have been dealing with chronic UTI for over 25 years. I was always given short courses of Keflex which worked for my UTIs, but the infection always came back.  I was having acute infections every six to eight weeks.  I went to a women’s health clinic and the doctor put me on prophylactic (low dose) Triprim.  This worked well for six months then stopped working.

I started to document all my UTIs, which was helpful for when I was finally referred to a specialist gynaecologist/ urologist.  The specialist gave me three cystoscopies over four years and then I said no more.  He tried me on different pain killers, but I react badly to many medications, so I had a lot of untreated pain. He put me on prophylactic Keflex.  This worked for about a year but then the infections started again.  He then put me on prophylactic Noroxin which again worked well for about a year then it all came back.

By this time I had non-stop pelvic pain which was debilitating.  I could only walk for about four minutes before I had to sit.  I could not bend to do normal stuff like gardening, making beds, cleaning cupboards etc.  My sex life was non-existent, my social life was non-existent. I was in pain all the time.

The specialist diagnosed me with interstitial cystitis (IC) and so my then-GP treated me according to an IC diagnosis.  I absolutely did not believe it was IC because whenever I had acute symptoms, my urine test often showed E. coli. Even when the test was negative the symptoms were the same as when the test was positive.  I knew absolutely, without a doubt, that there was E. coli hiding in my bladder.  I had joined an IC Facebook group and one day a person from a UK group spoke about her group believing IC was actually infection.  I joined her group immediately.   They spoke of a Professor who was treating these conditions with long-term antibiotics.

 

What type of problems have you faced when seeking medical help for your condition?
It was very difficult to get any real treatment. Doctors always insisted I had IC— but I knew I did not. I knew it was infection. The doctors and the specialist only offered treatment for pain and said there was no cure. They never ever tried to find the cause and that was what I wanted to know so that I could fix it.

 

Can you tell us what you’ve had to do to receive a diagnosis and appropriate treatment?
I found a new GP and explained my UTI history and had copies of all my urine tests. I told the GP about the Professor in the UK and I took a print-out of his treatment protocol.     The GP said she would read all the information and asked me to return in a week. When I went back, she had read the information and agreed to treat me with the Professor’s protocol. I told her that people from different countries had their GP email with the prof and she agreed to do this.

 

Can you explain how you’ve worked with your practitioner, and how they have accepted your chronic UTI diagnosis and supported you throughout your treatment?
My GP emailed with Professor Malone-Lee and gave him all the information about my bladder history and asked how she could treat it.     He told her that with similar patients in his clinic, he treats with full strength, long-term, narrow spectrum antibiotics (such as Keflex). He told her it takes a long time to get to the embedded infection, which I obviously had.   He also said I should take Hiprex alongside the Keflex.   My GP prescribed for me according to the Professor’s protocol and I improved within a couple of weeks.   I went a whole seven months without any symptoms at all but, then it started again.   My GP emailed the Professor again with an update and he suggested putting me on Augmentin Duo Forte combined with the Keflex, as in cases like mine new bacteria had obviously broken out.   I took the Augmentin for about seven weeks.  Then I stopped and was just on the Keflex and Hiprex again.   Things went really well for a couple of years, but every time I tried to stop the Keflex, my symptoms would return. So I would start taking it again.   After three and a half years I had sudden, severe acute symptoms. I was put on Doxycycline along with the Keflex I was taking. It worked immediately and extremely well.

 

Where are you at now with your treatment and your life?
I am now at almost four years on antibiotics and gradually stopping them. It seems for me that gradual is the trick rather than stopping suddenly.     I am hoping to be completely antibiotic free very soon.     I am now living like a normal person. I can even make beds and bend down to clean cupboards—woohooo!   I am now a normal person at last. I have no UTI pain.

Do you have any tips for others who are searching for treatment options?

  • It is very difficult to get treatment for embedded bladder infections in Australia because, as yet, a lot of GPs (and specialists for that matter) do not believe in it. They also don’t believe in treating with full dose, long-term antibiotics or a long-term treatment of some kind.

 

  • Not everyone can tolerate full dose antibiotics and so they must try other treatments. But any treatment really needs to be for a long time because short courses of anything just do not kill off embedded bacteria that may be laying dormant.

 

  • For those seeking treatment, it seems to be a matter of doctor shopping with ALL possible information you can give them. Find a doctor who is open-minded to new treatments and who will be willing to make contact with Professor Malone-Lee, or is simply willing to follow his written treatment protocol for chronic UTI.

 

I am now at almost four years on antibiotics and gradually stopping them. It seems that gradual is the trick rather than stopping suddenly. I am hoping to be completely antibiotic free very soon.

 

 

Imelda

Can you explain how long you’ve been dealing with a chronic UTI and to what extent your condition impacted your life before treatment?
I have had UTIs since the age of 17, so it’s about 35 years that I have been dealing with them. Before the treatment I received earlier this year, this condition impacted my life in many ways: I had to endure horrific pain on a regular basis; I missed out on family events; had long periods of not being able to be intimate with my husband; I missed out on work or even worse battled on at work but with terrible pain. Then there was the ongoing multiple doctors’ visits and urine tests, trying to get treatment from doctors and the worry that they didn’t know how to help me. Whilst I am quite robust emotionally as a general rule, these recurrent infections really brought me down. Even when I felt well, I was anxious about a recurrence and what events I would have to cancel or people I would have to let down if I did have a flare-up. My quality of life was really going downhill, and it wasn’t the type of life I wanted. Sometimes I contemplated suicide as I was looking for an escape.

 

What type of problems have you faced when seeking medical help for your condition?
I was told by a number of doctors and specialists that they were not able to help me. Most of them seemed like they cared and were genuinely sorry they were not able to help.  I can’t really say I’ve had bad experiences with the doctors I have interacted with. The problem was that they did not have an understanding of chronic UTI, nor, it seems, much of an interest in it. So, I never received proper treatment. Yes, they would prescribe short course antibiotics, and in the short term they would do the trick, but the problem always resurfaced. I was not well-managed medically.

It was rare for me to be denied antibiotics, although it did happen on occasion in the later years. I always responded well to them, so I think it was understood I needed them.

Sometimes my tests came back positive, sometimes they came back negative.  This is when one GP I saw starting to tell me I had interstitial cystitis (which is a generic term meaning inflamed bladder). I tried to show her some of the evidence I had found about the inaccuracies of urine testing, but she was not interested and became a bit angry. I left feeling quite unsettled and I haven’t been back to see her.

 

Can you tell us what you’ve had to do to receive a diagnosis and appropriate treatment?
I travelled interstate to get a diagnosis.  I bought my own microscope and learned how to diagnose my own infections. I have scoured the internet for hours to get an understanding of what cells look like under a microscope and now I can identify them more accurately by myself.  I changed GPs in the hope of finding someone who could medically manage my condition. I travel an hour each way for appointments.

 

Can you explain how you’ve worked with your practitioner, and how they have accepted your chronic UTI diagnosis and supported you throughout your treatment?
My new GP has been wonderful. He has an open and curious mind, but also a fair dose of scepticism. So, I make sure I present him with information that is factual and scientific. I don’t get emotional. He has taken an interest in my cell counts but relies mostly on my symptoms and urine test results, which thankfully have been positive both times I’ve done them. He says he has learnt a lot from me, which is such an encouraging thing to hear from a practitioner. He was willing to follow the protocol from the UTI specialist in London and I was largely better after just a month of treatment with the correct antibiotic (plus ongoing Hiprex). That was all it took after 35 years of suffering! This was a joyous time in my life.  I imagine my doctor might have felt a deep professional satisfaction in knowing he had helped someone who had suffered for so many years.

 

Where are you at now with your treatment and your life?
My life is back to normal! I am mostly pain-free! I am working more which is wonderful as I love my job.  I no longer need to cancel events due to pain.  So many of the things that were out of reach for me are now back in my life. It’s really been a wonderful few months. I’m now working on my strength and fitness and seeing a personal trainer as I am still prone to bouts of fatigue after all these years of being unwell.

I had a minor flare-up recently and went back on antibiotics for a few weeks. But it will passed. I have faith in the protocol from Professor James Malone-Lee which is what helped me so much in the first place.

The recent flare-up was a result of stopping my medication (Hiprex) for a couple of days.  This was long enough for the microbes to proliferate (I saw them under microscopy) and reinfect my urinary tract cells.

 

Do you have any tips for others who are searching for treatment options?

  • Keep searching ‘till you find a doctor who is willing to listen to you.  But don’t expect to find a UTI specialist in Australia. We’re not quite there yet.

 

  • Remember that doctors are scientists and will respond best to facts and measurements. One way to help them understand the hell you are going through is to record your pain levels and make a graph to demonstrate how your pain changes over time, particularly in response to taking antibiotics.

 

  • Be assertive when you talk to your doctor.  Book a double appointment and try to speak slowly and calmly. As a health professional myself, I know that anxious patients normally speak a lot, particularly in that first appointment. If you have negative urine tests and come across as anxious, guess what diagnosis the doctor will start to formulate? That your symptoms have a psychological origin rather than an infectious one. This will not be helpful if you actually have a chronic infection and need antibiotics.

 

  • Try not to get emotional and cry during your doctor’s appointment. I cried once and my GP, who was such a lovely lady, got quite frustrated. After that I decided not to let that happen again and instead said something like this to future doctors: “I’m not going to cry because that won’t be helpful, but this has been so difficult and it’s really getting me down”. In that way you’re letting them know about the impact the condition is having on your life, but in a more of a matter of fact way that does not come across as anxious.

 

My life is back to normal! I am mostly pain-free! I am working more which is wonderful as I love my job. I no longer need to cancel events due to pain. So many of the things that were out of reach for me are now back in my life.

 

 

Laura 

Can you explain how long had you’ve been dealing with a chronic UTI and to what extent your condition impacted your life before treatment?
I really can’t be sure how long I’ve been dealing with the chronic UTI. About a year and a half ago I got a UTI where I was just in a constant state of busting to wee (I don’t get pain from this). I took the antibiotics for this and within about an hour it was ‘better’, just like every other year I would get a UTI (which had been going on for probably about eight years, around once a year). The only problem was this time the UTI came back after two days whilst I was still taking the antibiotics. It was one of the scariest times in my life. I eventually had a GP prescribe me a different kind of antibiotic, and within a couple of hours again I was ‘cured’. However, after two days again I went back to constantly busting to wee. It would be so bad that sleep was impossible.  There really was no chance I would ever sleep again like that. I went almost four nights with no sleep. I’d been to three different emergency departments at different hospital.  They all just asked if I was in any pain, to which I replied, “no not physical pain”, and they just said, “well, I don’t know what you want us to do to help you”. They said I had interstitial cystitis (IC) and that I should take medication for an overactive bladder.

I was so scared at this point.  I started thinking up the most pain-free way out of this.   It’s so heartbreaking to think about as I have a beautiful young boy.  But I thought I was only going to die a very slow and painful death, regardless. I managed to eventually get in to see a urologist and he admitted me into hospital for IV antibiotics for two nights. The antibiotic drip did help to settle my bladder, though not as well as the initial antibiotics. After two days he discharged me from the hospital and put me on medication for overactive bladder. Over the period of a year, twice I tried to reduce the dose of this medication. Both times I went back to a constant state of busting to wee.

The reason I say I can’t really be sure how long I’ve had the chronic UTI is because even before all this started, I was already going to the toilet around every 45mins to an hour. It happened ever so slowly over years and years that I was just going more and more frequently. I really hope the simple explanation for this is that I already had the chronic UTI at this stage.

My bladder has had a huge impact on my life. Besides being the cause of one of my most frightening times in my life, it has really impacted my social life over the years. I would often avoid certain social situations with friends when I was younger. Anything that would involve sharing accommodation together, like holidays. At the time I was too embarrassed to say why. I was just too embarrassed at having to get up so much to use the loo through the night. I’m still faced with the same problem now when my husband and boy want me to come camping.

 

What type of problems have you faced when seeking medical help for your condition?
I’ve had so many doctors tell me nothing is wrong with me and that I’m fine. I’ve had doctors try to put me on antidepressants, as if I’m just making it all up and antidepressants will cure me. No doctor would believe me that I had a urinary tract infection because the antibiotics prescribed stopped working and the tests came back negative. I told the doctors I have never had a positive UTI test in my life, even though the antibiotics had always worked. They just said I don’t have a UTI at the moment as the tests are negative. They wouldn’t believe I had a UTI and could offer no explanation as to why the antibiotics would have worked initially if it wasn’t a UTI. No-one would believe me (only my husband).

 

Can you tell us what you’ve had to do to receive a diagnosis and appropriate treatment?
I was lucky enough after six months of Google searching to come across an old UK newspaper article about Prof Malone-Lee’s work and how he helped a particular woman suffering from a chronic UTI. I just knew I had a UTI as it’s the only thing that explains why the antibiotics worked (initially at least). I knew no doctors in Australia would believe me, so I booked in to see the Professor in his clinic and flew to London. I have been on his treatment of full dose, long-term antibiotics for around 10 months now.

 

Can you explain how you’ve worked with your practitioner, and how they have accepted your chronic UTI diagnosis and supported you throughout your treatment?
I would be lying if I said my practitioner has supported and accepted my diagnosis. In fact, I still haven’t found a practitioner that really does seem to believe my diagnosis. Though the good news is that since receiving my chronic UTI diagnosis, doctors are more willing to prescribe the medication I need for my treatment and it so far has not been a problem.

 

Where are you at now with your treatment and your life?
I’m 10 months into treatment. I really wish I had kept more of a record as to how bad things were, as it’s easy to forget. I do recall my bladder always being on my mind and was often going to the toilet every hour (as well as many times going every 20 minutes) despite being on the overactive bladder medication. Progress is very slow. I think that’s why it’s easy for me to forget how far I’ve come. However, there has definitely been progress. One of the main symptoms I used to get all the time that made me go to the toilet so frequently was this terrible impulse to wee—I can only describe it as feeling like I had a ‘brain infection’ or I was so busting that it gives me a headache. I can’t remember the last time I experienced this symptom now, perhaps the last time was around four or five months into treatment. Before treatment, going to the toilet after four hours or more, whilst on the overactive bladder medication, probably only happened once every few months. It was a huge deal for me, I used to get so, so excited if this happened. Now I could probably do this once a day, almost every day if I wanted to. Not saying I don’t need to go in all this time, as I do, but I am able to hold it more comfortably. Whereas in the past, I’d just be too uncomfortable.

Fingers crossed, I just continue to get better as my treatment progresses.

 

Do you have any tips for others who are searching for treatment options?

  • If you have a good doctor who is open-minded and willing to look into the Professor’s diagnosis and treatment protocol for chronic UTI, you are in good hands.

 

  • The way the Professor determines whether you have the UTI is by looking at your fresh urine straight under a microscope. He looks for the presence of epithelial cells and white blood cells. I now travel to South Australia, periodically, to see a naturopath who follows the Professor’s microscopy instructions to count cells. This gives an indication how my treatment is going. Some people have purchased their own microscope to monitor their cell count at home.

 

  • Of course, going to the UK at this stage to get a diagnosis from the Professor was the easiest way to get a doctor to prescribe the treatment I need for my chronic UTI.  Since my official diagnosis by a world-leading UTI specialist, I haven’t had a problem getting the medication I need. Based on my own experience, once properly diagnosed, things get easier in receiving treatment, so don’t give up. There are many women who have been on the chronic UTI treatment protocol without having to go to the UK, as they have found doctors who are more open-minded and willing to help their patients.

 

I'm 10 months into treatment. I really wish I had kept more of a record as to how bad things were, as it's easy to forget. I do recall my bladder always being on my mind and was often going to the toilet every hour (as well as many times going every 20 minutes) despite being on the overactive bladder medication. Progress is very slow. I think that's why it's easy for me to forget how far I've come. However, there has definitely been progress.

 

 

Pippa

Can you explain how long had you’ve been dealing with a chronic UTI and to what extent your condition impacted your life before treatment?
My UTI first started in 2006, and it took me nine years before I found the treatment that changed my life. At my worst, I was unable to work from pain, my sleep was impacted severely, and my social and sex life were non-existent.

 

What type of problems have you faced when seeking medical help for your condition?
A lot of denial from doctors as to the severity of my pain or condition. I was repeatedly told, in essence, that I would get better and to go away. I have been told it was caused by a STI (and hinted therefore it was my fault). I was also told it was only in my head and if I did some meditation or learnt to relax, everything would be ok. I was also given the excuse of my symptoms linked to ‘being a woman’ on many occasions, when for me, my cycle had no impact at all.

 

Can you tell us what you’ve had to do to receive a diagnosis and appropriate treatment?
I have had to spend hours, days, months researching, reading, joining forums, calling people, having appointments with ‘specialists’, and not settling for this condition to be my life for the rest of my years. Not accepting the diagnosis of  interstitial cystitis (IC), which to me, means we can’t help you, so here’s a label.

 

Can you explain how you’ve worked with your practitioner, and how they have accepted your chronic UTI diagnosis and supported you throughout your treatment?
I am very fortunate in that my local GP was a microbiologist first and has an interest in all things microbial. Once I had made the trip to London to see Professor Malone-Lee and started treatment, he was happy to follow the protocol and prescribe my antibiotics. He is also the head of the practice, which I think makes him more confident to prescribe. We already had a strong relationship prior to my visiting the Professor. I believe this also has made a big difference as there was a level of trust and understanding of my condition. However, with the right GP, I believe you could have that trust from early on, if you went armed with your facts and information, and shared it in a clear, informed and confident manner. Find someone who is keen and interested in learning. Our condition is (although actually quite simple), an interesting one to follow, so pique their intrigue and you’re half way there.

 

Where are you at now with your treatment and your life?
After two and a half years on Professor’s treatment, I was 98 percent free of symptoms and have been able to stop my antibiotics.  After almost a year of being off treatment, I recently experienced a minor flare-up of frequency and never feeling empty. I followed the Professor’s protocol and started back on my antibiotic treatment. After three days (for me, on this occasion) this was enough to settle things and I’m now back to being well again. I didn’t go to my GP, as even though he is very supportive of my treatment, I was pretty certain nothing would show on a MSU [midstream urine culture] test due to the poor testing capabilities.

My life is completely different, I can exercise, I can go all night without peeing, I can have sex, I can work, I have since had a baby. I am no longer on any pain relief, or antibiotics.

 

Do you have any tips for others who are searching for treatment options?

  • Trying to get better is exhausting. But so is being unwell. The only person that is going to help you to get better is yourself. As much as we want our doctors to come to us with solutions, at the moment the ultimate treatment has to be found by you. If there is any possible way you can go to the UK to see the Professor, it will change your life.

 

After two and a half years on the Professor's treamtment, I was 98 percent free of symptoms and able to stop antibiotics. After almost a year of being off treatment, I recently experienced a minor flare up of frequency and never feeling empty. I followed the Professor's protocol and started back on my antibiotic treatment. After three days, for me on this occasion, this was enough to settle things and I'm now back to being well again.

 

 

Helen

Can you explain how long had you’ve been dealing with a chronic UTI and to what extent your condition impacted your life before treatment?
I first had symptoms of chronic UTI in my early 20s. I’m now 55—so it’s now almost 35 years. It started with a UTI that progressed to a kidney infection. I was treated with antibiotics, but soon after that I had ongoing UTI symptoms that didn’t respond to a succession of antibiotics.

My main symptom is persistent bladder pain which intensifies as the bladder fills. The biggest issue for me has been disrupted sleep from having to get up every hour or so to empty the bladder—more frequently when I’m in a flare.

Eleven years ago, when I learned that I was to have a below knee amputation (due to cancer), the first thought that came to my head was that it would make getting up during the night even harder. My bladder issue remains a far greater disability for me than being an amputee. The disrupted sleep cycle robs me of energy—I often take a nap during the day if I can.

During my working day I can generally ignore the discomfort, although I do empty my bladder more frequently than most people. During flares there is always niggling pain, even on an empty bladder, so that can make me rather distracted and irritable. In my job as a performing musician, I find the extra adrenaline makes my symptoms worse and I’m often looking for the loo before I go out and perform.

Having this condition has rather inhibited my taking on new adventures or challenging projects. Activities like camping with friends just seem too difficult when you have to get up to empty your bladder throughout the night. Plus, it’s an embarrassing condition to have to talk about, especially with people you work with but don’t necessarily know so well. Even friends and family don’t really understand that you’re living with chronic discomfort and pain

 

What type of problems have you faced when seeking medical help for your condition?
I’ve been referred to at least five different urologists in Melbourne: none of their treatments relieved my symptoms. Initially I was told there was nothing physically wrong and was sent to a psychiatrist who had me on antidepressants for six weeks. After a cystoscopy, I eventually got a diagnosis of ‘interstitial cystitis’ (IC) and was tried on Ditropan, DMSO installations, Elmiron, Amitriptyline, pelvic floor exercises, diet modifications, TENS machine and acupuncture. One urologist said the next stop was an interstim implant. After two decades of intermittently seeking help, I pretty much gave up.  But I kept up with various interstitial cystitis forums and tried different dietary regimes, plus spent many thousands of dollars on non-prescription remedies (eg. freeze-dried Aloe Vera, Curcumin, Allicin, Quercetin, antihistamines, vitamins, Azo, CBD oil, D-mannose, etc).  My symptoms worsened when I hit menopause, but lessened back to a manageable level again when my GP prescribed hormone replacement therapy (HRT) and Vagifem.

 

Can you tell us what you’ve had to do to receive a diagnosis and appropriate treatment?
I’d read about embedded infections but hadn’t followed it up as a possible way forward, as there was no one in Australia testing for it. It was only in 2018 when I read Pippa’s interview in ‘The Age’, and someone directed me to the Chronic and Recurrent UTI Chat Group (Australia and New Zealand) that I saw some people in Australia were being helped by long-term antibiotic therapy. Thanks to the helpful notes in the Facebook group files, I decided to bite the bullet and make an appointment with one of the few people in the world successfully treating people with symptoms like mine, Professor Malone-Lee in London.

Once I’d booked my appointments with the Professor, I sent information, including one of his recent research papers, to my GP. I’ve had the same GP in Melbourne for 25+ years and I figured she was likely to be supportive, given that she’d seen me try so many avenues without relief. She read the research and agreed it made perfect sense.

At my first London appointment, the Professor analysed a fresh urine sample and established that due to my high epithelial cell (580) and white blood cell count (20), I definitely had an infection. He put me on the antibiotic Cefalexin. Two weeks later when I saw him again, my white blood cell count was down to zero and my epithelial cell count had come down to 230. He emailed a letter to my GP recommending that I continue on the same regime with the addition of (the non-prescription antibacterial) Hiprex.

 

Can you explain how you’ve worked with your practitioner, and how they have accepted your chronic UTI diagnosis and supported you throughout your treatment?
Back in Australia, my GP happily gave me the necessary scripts. Inspired by another person with chronic UTI (from our Chronic and Recurrent UTI Chat group), I purchased a microscope so as I could do my own cell counts to monitor my progress (regular pathology services usually won’t do counts on fresh, unspun, unstained urine).

Several times now I’ve updated the Professor—sending links to video of my microscopy sessions. I still have a high epithelial cell count, so he has advised my GP to continue with the same antibiotic for now. He has suggested that if symptoms don’t improve, he may “edge in the direction of a diagnosis of obligate intracellular infection” which I gather is more difficult to treat and will require a change in antibiotics.

 

Where are you at now with your treatment and your life?
I’m still very much a work in progress, I think. I am now 6+ months on antibiotics, and whilst I can’t say my symptoms have improved yet, I remain patient and hopeful that I’m on the right track. The Professor seems committed to getting to the bottom of this and my GP remains supportive. I had a major flare-up of symptoms at the 5-month mark—which I soon realised was due to coming off HRT. (I’d been on HRT for two years and my GP advised me to try coming off it.)  Now that I’m back on HRT (Kilovance), my symptoms have settled to much as they were before. I take Azo (Phenazopyridine Hydrochloride) most nights to take the edge off the pain. My epithelial cell counts are still high (150–200). I understand that it can sometimes take years to root out an embedded infection.  Thankfully I haven’t had any adverse effects from the treatment, so I’m happy to continue. At this stage I hope to have a follow-up appointment with the Professor mid-2019.

 

Do you have any tips for others who are searching for treatment options?

  • I’d probably advise anyone who suspects they may have an embedded infection to stop buying expensive supplements and chasing “IC” cures. Read about the Professor’s work.  Scrape together some money and go to London for two weeks if you can, for appointments with the Professor (or his son). Yes, it’s expensive (I’m a low-income earner and renting) but it seems simpler to get a diagnosis from someone who your GP might respect and listen to, rather than trying to convince the GP yourself that this might be your problem.
  • When you’re trying to enlist the help of your GP, rather than spring all the information onto him/her during your appointment, I think it’s better to send it by postal mail a week or more in advance with a letter politely asking them to consider this treatment.
  • When you give a urine sample, make sure it’s not dilute. In the past I was always drinking lots of water as it lessened the pain when symptoms were bad.  I think having very dilute urine is part of the reason I virtually never had a positive test for UTI in Australia. (Though pathologists here dismissed my occasional extremely high epithelial counts in any case.)
  • Check out the videos on urine microscopy—it’s a fascinating area and not that hard to do the basic stuff yourself.
  • Join the Chronic and Recurrent UTI Chat group—it’s a real source of encouragement and education. Without the group, I would not have the diagnosis I now have. Yes, the jury’s still out on whether I will be cured or not, but I’m more confident that I’m on the right track now than I’ve been in a long time.

 

I am now 6+ months on antibiotics, and whilst I can’t say my symptoms have improved yet, I remain patient and hopeful that I’m on the right track. The Professor seems committed to getting to the bottom of this and my GP remains supportive.

 

To get you started

There is a growing number of Australians actively working with their doctors to learn and share new information about chronic UTI.   More and more women (and some men) are being diagnosed and successfully treated for chronic UTIs, right here in Australia.

If you suspect you have a chronic UTI, here are some tips that could help get you started on your own recovery path:

 

  • Connect with the growing chronic UTI global network by accessing different websites, forums and Facebook chat groups to find information and support.  There are some listed here.

 

  • Subscribe to our monthly blog to read about patient experiences, continue learning and stay connected with the growing online chronic UTI network.

 

 

  • Please remember, you are not alone!  There’s a whole chronic UTI community out there sharing information and supporting one another.  Get connected!  Start here with our FAQs!

 

You can find out more about Professor Malone-Lee’s private clinic here.

 

 

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