01 Oct Wendy’s Chronic UTI Story
After suffering from recurrent UTIs for 60 years, getting through each day had become unbearable for Wendy. Her recurrent UTIs had become so unmanageable, she was living in constant pain with urinary symptoms that had her visiting the toilet up to 50 times a day. Along with countless short-course and prophylactic antibiotics, she was offered treatments such as urethral stretches to help manage her symptoms. Wendy was eventually diagnosed with interstitial cystitis/painful bladder syndrome (IC/PBS) and told she would have to learn to live with her painful symptoms. By now, she was battling an ongoing cycle of vaginal thrush and living on pain killers to get through each day. By chance, she stumbled across a UTI specialist who was experienced in treating chronic infections. Within months of starting treatment, she was surprised to find herself symptom-free and once again participating in a life she thought she had lost. Wendy’s swift recovery allowed her to return to her beloved lawn bowling competition and she is now competing at a County level. Find out more about Wendy’s inspiring story here.
I had my first UTI when I turned eight and they kept on coming
When my life felt like it had come to a complete stop in 2016, I knew I had to do something about my recurrent UTIs. I was 68 and in so much pain I could no longer function. I was sometimes going to the toilet 40 or 50 times night and day! It was horrendous.
Up until then I had a busy life playing lawn green bowls, but I was no longer able to make the commitment as I never knew when I would be ill. I was suffering from a long list of problems, including urgency, frequency, bladder pain and spasms, burning, a thrushy feeling, swollen genital area, feeling very sore and heavy almost like everything was falling out and sharp shooting pains. It often felt like my bladder was holding a gallon but only a dribble came out. I often had pain at the beginning of urination and sometimes at the end. I could often be desperate to go, but unable to. Basically, I was a mess!
I was often at the doctor with what I was sure was a UTI, but the tests were so often negative. I have since seen those tests and I often had counts of 50-60 white blood cells (leucocytes), but they still said I had no UTI. I went through a lot of doctors and incontinence nurses who were all kind, but basically they did not have a clue how to help me.
My problems started when I was eight and had my first UTI. I was told to drink barley water. The UTIs continued throughout my school life. I had a letter for the school so that I could go to the bathroom whenever I needed to. When I was 16, I contracted Rheumatic Fever and was put on a low-dose antibiotic for four years. During that time, I had no UTIs. Obviously due to the antibiotics.
I was suffering from a long list of problems, including urgency, frequency, bladder pain and spasms, burning, a thrushy feeling, swollen genital area, feeling very sore and heavy almost like everything was falling out and sharp shooting pains. It often felt like my bladder was holding a gallon but only a dribble came out.
I got married and realised sex was a trigger for my UTIs
I was married at 20 and then had 18 months of continual UTIs, every three or four weeks. I had a cystoscopy and a urethral stretch to no avail. At one point the infection went into my kidneys and I was very ill with pyelonephritis. It was 1969 and the doctor said he had tried every antibiotic available at that time. If the next course of antibiotics did not work, he did not know what to do. They must have worked because I am here today!
I realised that sex was a trigger so avoided it as much as I could. This does not make for a very successful relationship. I did manage to have two very healthy sons. As I always suffered with thrush after taking antibiotics, I started to treat myself with the cystitis sachets from the chemists. I generally had a UTI three or four times a year, but I thought that was normal.
I met my new partner when I was 42. And yes, you’ve guessed it, the UTIs and the thrush returned, with a vengeance. For two years it was a complete nightmare.
In those days you could only get Canesten for thrush with a prescription. For a while the doctors would not prescribe until they had sent off a swab and/or urine sample and got the results. But after several bouts of thrush, they did give me a prescription whenever I rang up. I went on a yeast-free diet. I tried every treatment suggested to me … and there were quite a few. Some, involving yoghurt, were very messy. Eventually my body recovered, but I have no idea which treatment was the effective one.
For the next 20 years, I continued to have UTIs three or four times a year, but I managed to live with that. Then in 2011, it all started in earnest. The cystitis sachets no longer worked. My doctor put me on a prophylactic course of antibiotics for a year and I remained symptom free in that time. But of course, the UTIs returned once the antibiotics stopped.
I had urgency and frequency and was sent to see the incontinence nurse (what a name). She put me on oxybutynin, but that gave me retention.
I was diagnosed with interstitial cystitis/painful bladder syndrome (IC/PBS) and told there was no cure
I was eventually sent to a urologist who was lovely and caring, but unfortunately for me, ineffective. He put me on an acid-free diet, gave me 25 mg amitriptyline, 10,000 mg of cranberry tablets and 6-8 glasses of water per day! I was told I had painful bladder syndrome/interstitial cystitis (PBS/IC), and there was no cure. I had to go home and learn to live with it! He had also diagnosed me with a prolapsed bowel, a prolapsed bladder and vaginal atrophy. He referred me to a colorectal surgeon who diagnosed a dysfunctional pelvic floor and a slow transit digestive system. I was referred to a pelvic floor therapist and a dietician. The dietician told me which vegetables not to eat and the pelvic floor therapist helped me to re-engage my pelvic floor. I was given Vagifem for vaginal atrophy.
I was told I had painful bladder syndrome/interstitial cystitis (PBS/IC), and there was no cure. I had to go home and learn to live with it! The doctor put me on an acid-free diet, gave me 25 mg amitriptyline, 10,000 mg of cranberry tablets and 6-8 glasses of water per day!
For six months or so the amitriptyline and the diet did seem to work. But then the effect wore off. My GP upped the amitriptyline to 35 and then 50 mg and also put me on gabapentin 300 mg x 3. This did not get rid of the pain, but it did help to control it somewhat so that I could function. Although I had to gradually increase the gabapentin to 600 mg per day. I still had bad days and never knew when they would hit. Making plans and commitments had become impossible. I started making and drinking my own kefir (a probiotic drink) in an effort to help my digestive system.
I heard about a UTI doctor who specialises in treating embedded urinary infections
I joined a Facebook group where I met a lot of lovely people all suffering the same, or similar, to me. It was comforting to know I was not alone, but sad to know we were all in the same boat. We were all ill with no treatment or cure!
Then I started to hear talk of Professor James Malone-Lee in London. He treated his patients for infections that had become embedded in their bladders. The treatment required long-term, full dose antibiotics to kill the bacteria once and for all. I asked my urologist about it, but he just laughed and said that was not what I had!
I started to do my own investigations online and read a lot of differing opinions on how to cure PBS/IC. I decided I was not going to learn to live with this, by now I was 69. I wanted the years that were left to be good ones. So, although I did not have a lot of money, I decided I would start with this Professor that others had raved about, just to rule out the ’embedded infection’ theory.
I made an appointment. I was shocked and stunned when the lovely Professor told me I had a serious infection. I had a white blood cell count of 84! I was stunned and speechless (and those who know me know that does not happen very often!).
Could this specialist really cure me?
“Can you cure her?” asked my husband! “Yes, of course” replied the Professor. It did not seem real. I was put on a full dose of antibiotics and also Hiprex. I saw the Professor on 22nd June 2017, a day I will never forget. Within one month I was symptom and pain free. I started to reduce the nerve blockers. By 25th September I was taking no amitriptyline or gabapentin, I had no pain and was symptom free. I was able to eat and drink all the foods and alcohol that I could not tolerate before. I also started bowling again and had my social life back.
I have now had 11 months almost completely pain and symptom free. I do have the occasional niggle and that is when I am shedding! But it is negligible. I am now back to my bowling life. I was part of a team that won a winter indoor league. I am now also bowling outdoors again and am even involved in a County game. I never thought I would be able to do these things again!
Can you cure her?” asked my husband! “Yes, of course” replied the Professor. Within one month I was symptom and pain free. I am forever grateful to the Facebook friends that pointed me towards the Professor, and forever grateful to a wonderful devoted Professor who has definitely given me my life back.
I was very lucky and had a very rapid recovery. I know others are not as fortunate and have a very bumpy ride. I also know it could all change at any time, so I have learnt to appreciate every day. My husband has also had serious health problems so we both enjoy life while we can. And we make the most of every good day!
I am still on antibiotics and am willing to take them for as long as it takes for me to be completely cured. I am also taking my probiotic drink, (kefir) and prebiotic (Apple Cider Vinegar in hot water with honey) every day.
My tips on finding help
– Don’t give up hope.
– Keep searching for answers.
– Speak to lots of people.
– Try everything.
– We are not all the same and we do not necessarily all need the same treatment, nor do we all respond the same.
– Join a Facebook group and get support, help and advice (do a Facebook search for UTI groups).
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Aimee MPosted at 04:37h, 02 October
What a fantastic story you have here! Congratulations on getting your life back. I appreciate the encouragement so very much. I would love to know what antibiotics you were given, and sound like you are still on, by Professor James Malone-Lee in London.
Many thanks, I am back in the game.
Wendy PPosted at 16:40h, 02 October
Hi Aimee, I was put on cefalexin 1000 mg x 2 in June 2017 and am still on the same today. I have been very lucky and had no side effects. I also take Hiprex 1000 mg x 2! I take Apple cider vinegar as a prebiotic and drink kefir as a probiotic to ward off thrush. Life is so good now!! Hope this info helps.
Aimee MPosted at 23:45h, 02 October
Thank you so much for your prompt reply. Your regimen gives me hope! I appreciate you contributing to this website about your journey through this nightmare. It does help to know there are others suffering and that there are ways out of this horrible, painful life altering illness. I finally found Hiprex via Australian pharmacy and it’s being mailed to me at vast expense as I live in the USA (not proud of that fact BTW) , however, the dosage isn’t any where near 1000 mg! Each tablet contains Hexamine Hippurate 1g Soooo guess I need to find a doctor that can prescribe a more effective dose. I sent your article to my doctor as I have an appt. with her next week.
Thanks again and lots of gratitude to you and may you thrive in your life.
Wendy PPosted at 00:37h, 03 October
Aimee M 1g equals 1000 mg so you will be getting the correct dosage!!! It is an old fashioned medicine that is more for the prevention of UTIs than the cure, but either way it should help. It tastes vile so be warned. Also some girls have trouble taking it so maybe just take one a day or even half at first till you get used to it!! The company that make it had production problems a while ago so some of our girls had to order it online as well. I believe it is cheaper in Australia than here!!! Good luck xx
Aimee MPosted at 00:40h, 03 October
OH! That is important info 🙂 Thank you very much. ~A
Chronic UTI AustraliaPosted at 09:59h, 03 October
Aimee, print off this paper and take it to your doctor too. It’s a recently published study that Wendy’s treatment is based on https://link.springer.com/article/10.1007/s00192-018-3569-7
The paper analysed the case studies of 624 women over ten years at the Lower Urinary Tract Symptoms (LUTS) Clinic at the Whittington Hospital, London. The patients had suffered their symptoms an average of six years, with no treatment having brought relief. The group included existing diagnoses of overactive bladder (OAB), bladder pain syndrome/interstitial cystitis (BPS/IC) and recurrent UTI (rUTI). Based on their symptoms and detection of pyuria (white blood cells) in microscopic analysis of immediately fresh urine, the patients were treated with a full dose of first-line, narrow spectrum oral antibiotics, such as cefalexin, nitrofurantoin or trimethoprim,along with the urinary antiseptic Hiprex, for an extended period.
Long-term antimicrobial treatment (for an average period of just over a year) resulted in significant reductions in patients’ urgency, pain, frequency and voiding symptoms, and a decrease in pyuria. The large majority (84 per cent) of the women who completed treatment experienced improvement: 64 per cent rated their condition as “very much better” and a further 20 per cent rated it as “better”. These improvements were achieved with a very low frequency of adverse effects and no increase in antibiotic resistance.
The study findings are important because, under standard diagnostic criteria, these patients would have been told they had no infection or an infection that was resistant to certain antimicrobial agents.
AnastaciaPosted at 13:22h, 12 October
Thanks for sharing your story!
I have been living with reoccurring UTI for years now, I am 29. When I was in my early 20s I had them few times a year sometimes few times a month.
Similar like the stories above I was put on high dose antibiotics for 6 months (Mircodantin 100mg) 1 tablet before bed time every day.
This helped significantly and I was UTI free for few years. I though I will never have this again, until April 2018. Since April this year to date I have had UTI 4 x times. I was prescribed Macrodantin again (one dose) and I am fine at the moment.
I have to mention that I have been on the pill for 4 years prior to stopping these in April 2018. and in a casual discussion with my GP I did mention that while I was on the pill I didn’t have this problem.. She mentioned that it is possible that my estrogen levels are low now that I am not on the pill and low estrogen makes the urethra thinner which makes it more prone to infections. You would guess that my first though was to go back on the pill, but the reason I stopped it was to give my body a good break as my husband and I are wanting to have a baby.
Now that I am not on antibiotics and not on the pill, I take Hipprex 2 x a day and 1 x Cranberry table of 60,000mg. I also am also very careful especially after going to the toilet for No. 2 I shower straight away or use wet toilet paper if I am not able to get into a shower. I drink a lot of water during the day and parsley tea on the weekends when I am at home and I always pass urine straight after intercourse.
I hope the prolonged use of antibiotics will help other as it didn’t work for me. I am still in the search for more promising permanent solution that doesn’t involve antibiotics
Wendy PPosted at 18:16h, 12 October
Hi Anastacia, first of all good luck when you try for a baby.
There are quite a few ladies who have become pregnant and had babies whilst still taking antibiotics. I am nervous at the thought of coming off the antibiotics.
Your experience with the contraceptive pill ad your doctors comments have made me think. Certainly I had less UTIs whilst on the pill and more since I stopped. However I am now 71 and have vaginal atrophy but my doctor has prescribed oestrogen for me so maybe that has been part of my healing process. I am also meticulous in the loo and do all I can to keep myself UTI free. Hiprex can help quite a lot so I wish you every success on it.
Thanks for your comments.
Mazoli-ICPosted at 08:08h, 13 October
I was diagnosed with Interstitial Cystitis (IC) in 1995. I feel so frustrated that treatment options for IC have not advanced since 1995. I started a blog to share my story. https://treatinginterstitialcystitis.wordpress.com/ The last treatment I had was Botox injections in my bladder wall. The Botox injection process was painful, and I got very little relief. If anyone knows of anything that helps for IC, please add a comment or go to my blog and post. Thanks!
Wendy PPosted at 08:42h, 13 October
I was also diagnosed with interstitial cystitis. I was told by my urologist to go home and learn to live with it. I don’t claim to be cured but I have been treated by Prof Malone Lee with high dose long term antibiotics. I have been pain and symptom free for over a year now and am very very grateful. I can only tell you my experience!! But this treatment has given me my life back.
Mazoli_ICPosted at 13:44h, 14 October
I wish I could get my life back. I was diagnosed with Interstitial Cystitis (IC) in 1995. I am always searching for something new that could alleviate my symptoms especially the constant pain. Do you think this professor could help me? I started a blog to share my story and support others who struggle with this disease. https://treatinginterstitialcystitis.wordpress.com. Please visit my blog and add comments. I would greatly appreciate it. Maybe your treatment would work for me or one of my readers.
Mazoli_ICPosted at 15:42h, 14 October
Your story gives me hope. I wish you all the best. I will take a closer look at the professor that helped you.
Wendy PPosted at 19:35h, 14 October
Sadly he only works in London but he does have people flying in from all over the world to see him. Also have a look at professor Barry Marshall as he is currently studying IC and hoping to find a cure and he works in Australia. Also have a look on our profs website http://www.chronicutiinfo.com as there is lots of good info on there. If you have a good doctor you could print stuff off and take it to him. There is a special article just for GPs. Good luck xx
Mazoli_ICPosted at 06:57h, 15 October
Thank you for the resources. I will definitely explore these. My daughter is going to college in Scotland so I may take a detour to London first. Did you have IC or persistent bladder infections? Can I share your story on my blog? It would be great if you would click follow on my blog. My readers (and myself) would benefit from your knowledge. For many IC sufferers, they don’t know where to turn. Success stories gives us hope. https://treatinginterstitialcystitis.wordpress.com. If you don’t have time for a blog, I am still grateful for the information you shared with me. I know one day I will get the treatment that gives me back my life. Thanks again.
Chronic UTI AustraliaPosted at 08:26h, 15 October
Dear Mazoli_IC, Wendy’s story is not an isolated one.
If you read through the stories from the other authors on our blog, most of them (if not all) were diagnosed with interstitial cystitis or painful bladder syndrome at some point.
Along with long-term, full-dose antibiotics, there have been others who used a different treatment approach.
Have a read through and explore some of the other stories to see how others healed from their embedded chronic UTI https://www.chronicutiaustralia.org.au/blog-2/
Chronic UTI AustraliaPosted at 08:40h, 15 October
Dear Anastacia, thanks for your comment. Wendy’s long-term antibiotic treatment was different to yours. She has been on a full therapeutic dose of her specific antibiotic for an extended time. 100mg Macrodantin once a day is not a full therapeutic dose, but it appears it helped hold your infection back while you were taking it.
Please look at this page which explains why chronic UTI is difficult to treat and requires a long-term approach https://www.chronicutiaustralia.org.au/chronic-uti/how-chronic-uti-forms/.
Also, read some of the other stories from the blog as there are others who have treated their chronic UTI successfully without antibiotics https://www.chronicutiaustralia.org.au/blog-2/
Have you tried d-mannose? Some people find it is effective, but it depends on your infection.
Good luck with your search.
Mazoli_ICPosted at 13:27h, 15 October
Thank you. I will definitely read other stories about people with IC. I do not know if long term antibiotics will help me. I don’t think I have ever had a bladder infection. My primary symptoms are frequency, spasms and constant bladder pain. I did read though that IC sufferers might not test positive for infection but there is infection buried in the bladder wall and is undetectable.
Chronic UTI AustraliaPosted at 16:13h, 15 October
Mazoli_IC, yes this page helps explain how bacteria can become embedded in the bladder wall and why chronic UTI is so difficult to detect using standard UTI tests https://www.chronicutiaustralia.org.au/chronic-uti/how-chronic-uti-forms/
Wendy’s specialist doesn’t rely on standard tests. He diagnoses chronic UTI based on the person’s history, symptoms and the identification of infection signals found in a fresh urine sample under a microscope (white blood cells and epithelial cells). This is performed at the appointment.
Please also look at this page. You might find you are very familiar with some of these symptoms https://www.chronicutiaustralia.org.au/chronic-uti/chronic-uti-symptoms/
Absence of a confirmed UTI history does not mean you couldn’t possibly have a chronic UTI. UTI testing is very poor. Dipsticks (used by the GP) are insensitive and research has shown they can miss up to 70 percent of infections. MSU cultures (used at the lab) also perform badly and have been proven to miss between 50-80 percent of infections. Based on how poorly the tests perform, it’s difficult for infection to be ruled out, wouldn’t you say? There is more detail about the problems with UTI testing on this page https://www.chronicutiaustralia.org.au/uti-testing/
I hope you find this information helpful.
Wendy PPosted at 17:16h, 15 October
Hi Mazoli, I have no problem with sharing on your blog. My symptoms were not always diagnosed as a UTI but my doctors often gave me antibiotics. I spent a whole year on a prophylactic dose and it did help. But when I stopped it returned. My main symptoms were urgency, frequency, bladder awareness, spasms and burning. But there were e a few others as well. I hope you manage to find a solution. ?