Kris UTI Success Story: Multiple Healing Approach
Here is her blog in Chinese by the way: ε°Ώιη(UTI) ιθ³ͺζ§θθ±η (IC) εδΊ« - ιι¦ζΈ―εε€εζ²»η θ³ζ and below she has submitted her story in English:
(*Please bear with me for any grammatical mistakes or unnatural expressions in my sharing below.)
The rest is history
My symptoms continued, so almost a month later (!!!), I started to see urologists. (Looking back it was a huge mistake but at first it didn’t look like a UTI at all; it’s more like yeast infection as my doctors diagnosed.) One of the urologists was willing to prescribe 7 days of Levofloxacin 500mg based on my urine culture of Enterococcus, despite my consistently low white cell counts. I felt immensely better after three days of dosage, and thought that I had recovered. However, a week after I finished my first round of antibiotics, the symptoms relapsed. I then took my second round of Levofloxacin but this time it didn’t work anymore.
Like many of you, my urologist suspected that I might have IC and suggested a cystoscopy in order to confirm this diagnosis. At that time, I had frequency and urgency problems and pelvic pain. My urethral opening was swollen and I had a burning sensation when passing urine. I also felt tingling pain and burning after drinking lemon water.
I thought it was an infection which had not cured yet, but unfortunately my doctors didn’t think so. My symptoms were the worst from September 2019 to December 2019. But it was the suspicious IC diagnosis that directed me to Lexie’s Vancouver UTI girl blog and wonderful support groups such as Embedded UTI. All the first-hand experience, valuable information and incredible support guided me through the dark, both physically and emotionally.
Verdict on my medication (after two initial rounds of Levofloxacin)
December 2019: Amitriptyline 10mg + Cimetidine 400 mg + clean diet π
Amitriptyline worked wonders! After taking it a few times over the weekends, I woke up one day feeling that I had a calm bladder all of a sudden. The frequency and urgency problems were gone miraculously.
Apart from Amitriptyline, I think taking a clean diet and Cimetidine for a few weeks helped to reduce inflammation and make my urethra less swollen.
December 2019 – January 2020: short rounds of Augmentin + Levofloxacin ☹
Based on my low white cell counts and Microgen results on Enterococcus, I was prescribed Augmentin 1000mg x 2 for two weeks, and then Levofloxacin 500mg for three weeks by two other urologists, who were open-minded and diagnosed me with UTI and urethral syndrome respectively. However, short courses of antibiotics didn’t seem to help with my remaining symptoms, including pelvic pain (tightness) and an awkward feeling that my urethral opening was a bit blocked (although not as swollen as before).
February 2020 – May 2020: Hiprex ☹
It was hard for me to get my pH value down even though I added Vitamin 1000mg or L-Methionine in my regimen. My average was 5.5-6.0, so I didn’t think Hiprex took effect at all.
In early March, I actually travelled all the way to London to see Dr Raj under Professor Malone-Lee’s team. She diagnosed me with embedded infection. Here’s her diagnosis FYI:
Symptoms summary
(My remarks: OK to urinate over 300ml in one go, but have to do double voiding to urinate the last bit)
Urinalysis result
White cell counts / pyuria / pus cells = 2
Epithelia cell count = 0
New treatment
Hiprex 1 gm tid (three times daily)
Vitamin C 1gm qid (four times daily)
Cefalexin 500 mg qid (four times daily) – PRN
April 2020 – October 2020: long-term use of Nitrofurantoin (and with Levofloxacin added) ☹
Although I got a prescription for Cefalexin from Dr Raj, I had to confess that I ended up taking Nitrofurantoin prescribed by my local urologist. He was willing to prescribe Nitrofurantoin 100 mg x 4 for six weeks based on my Microgen results and diagnosed me with urethral syndrome. (Anyway, doctors may have different terms of the diagnosis but it’s great that he doesn’t believe in IC.) It’s hard to find a urologist who is willing to prescribe such long-term dosage of antibiotics but he seemed to understand the situation that I was faced with – negative urine culture and low white cell counts but consistent pelvic pain and voiding problems.
Because of the work-from-home arrangement during the pandemic, I plucked up my courage to take the long-term antibiotics therapy at my own risk. (I managed to purchase further months of Nitrofurantoin using my urologist’s old prescription from a small pharmacy in my neigbhourhood discreetly.) I continued with the regimen of Nitrofurantoin 100mg x 4, and I took it for three months in total.
I took a Microgen test on antibiotics and the result came back negative, which meant the antibiotics was kicking in. Then after stopping antibiotics for 21 days, I had a re-test off antibiotics. It turned out that there were lots of new bugs coming up this time, but I tended to believe that they were colonizers rather than the pathogen hiding in biofilms.
Anyway, I continued with Nitrofurantoin for another two months, with Levofloxacin added (in other words a combo!) in the last month. Unfortunately, half year of antibiotics didn’t seem to make huge progress at all. I still had the same symptoms such as pelvic pain and voiding problems.
Luckily though, I didn’t experience serious side effects. When I first took Nitrofurantoin, I had nausea and sometimes threw up. I was most afraid of yeast infection, so I inserted boric acid suppositories and took Fluconazole once a week as prevention. I got a check-up on my kidney and liver, and it was fine.
May 2020 – August 2020: boric acid and dilator π
Interestingly, I found that each time after I used boric acid as preventive measures, I often felt less pelvic pain because some discharge was coming out. It resembled how I felt when I had my period (especially the first few days with more blood flow).
I started to look up more about pelvic floor, and then tried to use a dilator to do internal massage. It helped to relieve my pain instantly.
Perhaps the long-term antibiotics was helping somehow too, but it was boric acid and a dilator that gave me an instant relief.
September 2020 – November 2020: physiotherapy π
I managed to find a physiotherapist who received her specialized training in women’s health in the UK and was knowledgeable about pelvic problems. She said it’s common to have a tight pelvic floor after UTI. She did internal work for me using her fingers and taught me to do breathing exercises. She also corrected my pelvic alignment as it was found mal-aligned. I also did stretching exercises, following Youtube channels such as FemFusion Fitness, the Flower Empowered and Michelle Kenway.
The weekly sessions were helpful but I didn’t continue after two months because I started to take TCM and wanted to save money. She recommended that I might use a vibrator called Gigi (though I know there’s a vibrating pelvic wand which is designed for medical use), but I think my dilator has done its job okay so far.
October 2020 – February 2021 (present): Traditional Chinese medicine π
I started to feel less pelvic pain and get to where I am now after taking TCM for two months or so. (Please refer to my ‘current symptoms’ at the beginning of the post.)
I did try TCM before but those herbalists didn’t seem to be very knowledgeable about my illness. As for my current herbalist (who was referred to me by a member of a support group), he encourages doing breathing exercises and singing, in addition to TCM, to help manage my pelvic pain. He has prescribed some herbs that have warming effect on my pelvic floor and promote blood circulation. (Here’s a link in Chinese: https://sys02.lib.hkbu.edu.hk/cmfid/details.asp?lang=cht&id=F00118) He has also prescribed some herbs that help to calm my nerves. Besides, as he is experienced in bone-setting and pain management, he performed pelvic alignment and acupuncture for me in my first few visits.
Apart from TCM, I still take Amitriptyline 10mg and use a dilator to do internal massage as needed (probably once or twice a month), but it is not as often as before.
Conclusion
Thanks for reading my story. I feel grateful that, as evidenced by my low white cell counts, my UTI was a milder one (even though I still remember the nightmare of having to hold my pee and wanting to cry while looking for a washroom).
Looking back, I had a feeling that my UTI was cleared to a large extent in the first two rounds of Levofloxacin, but the symptoms have been lingering. My urologist said that after weeks of yeast infection and UTI, my nerve system was kind of ‘out of order’. Therefore, I assume it is why Amitriptyline and some other treatments have been much more helpful for me, even though I believe Hiprex and the long-term antibiotics may still have played a role in eradicating the remaining pathogen. In short, multiple treatments have to be taken with patience in order to cure complicated UTI cases like ours.
I am not fully healed yet, but at the beginning of a new lunar year, I wish to send some good thoughts and encouragement, as I received from all of you along my healing journey.