Cystitis : Do you suffer Every day Like Me?

Females forum: My mom’s story

GREETINGS AND FOREWORD for UREAPLASMA

Greetings to the entire Ureaplasma Test website and forum. It is truly very interesting and full of food for thought, information, and STD Test advice. Honour and credit above all to Rosanna, the founder, without whose strength, tenacity, and solidarity towards those suffering made all this possible. But we know that only those who experience pain themselves can fully understand the pain of others.

I would, therefore, like to explain my mother’s story here. She is now 91 years old and has been suffering since 2013 from episodes of cystitis. It was initially sporadic, isolated, and then became much more frequent. Too many STD antibiotics, lots and lots of superficiality in doctors (urologists and urogynecologists) and much suffering in the Ureaplasma patient. A significant decrease in the quality of life accompanied this. However, the battle against cystitis has not yet been won. I must say that I have had the first results since, by chance, I found the CISTITE.INFO APS ONLUS website while searching the web.

I had lost hope of getting to the bottom of the cystitis and, if not to resolve it, at least to keep it at bay. Rosanna, her story, her initiatives, her tenacity and your stories have rekindled it in me. And I’ll go straight to my mother’s story.

II. MY MOTHER’S STORY

My mother started suffering from cystitis in 2016. In particular:

•  from 2013 to 2016, two acute episodes of bacterial cystitis: one due to Escherichia coli, the other to faecal Enterococcus;
• in 2017, two acute episodes of faecal Enterococcus;

In 2018, from April to July, there were four acute episodes of cystitis. Escherichia coli caused three of them, and faecal Enterococcus caused the fourth.

In the only episode of acute cystitis in 2017 and the 1st, 2nd and 3rd episodes of 2018, the therapeutic protocol was prescribed by 2 different urologists. They examined her as always. The symptoms were local itching in the intimate areas, burning, smelly urine and increased urination frequency. Her STD Doctor prescribed a urinalysis and urine culture with the relative antibiogram, followed by a specific Ureaplasma medication. This depends on the case (levofloxacin, amoxicillin, ceftriaxone, etc. ), accompanied by an invitation to drink lots of water (1.5 – 2.0 l per day).

For STD prevention, in some cases, she has prescribed the intake of supplements such as KYSTELLA (based on D-Mannose); others of KISTINOX ACT and lactic ferments with D-Mannose (UTIBIS), plus another supplement for accelerating intestinal transit (NOSTIP). But the Ueraplasma problem always recurred every time after a short period.

The 6 month treatment plan

After the July 4th, 2018 episode caused by faecal Enterococcus, a third specialist prescribed a more complex 6-month treatment: 15 days per month of lactic ferments and probiotics (NATURAFLORA PLUS, PROLACTIS IVU), rejected estrogens (GELISTROL) after 3 applications due to invasiveness. Every other month, IALURIL SOFTGELS capsules for 15 days, and UROGYN tablets (3 per day) every day, along with one NEOFURADANTIN 100 mg tablet every evening throughout the STD treatment, except for the initial 7 days (2 tablets per day). To counteract the acute episode due to faecal Enterococcus.

After 4 months (end of July – November) of treatment, all the symptoms seemed to have regressed. The bad odour from the urine and a higher urination frequency reappearance suggested something else. At the check-up visit in November 2018, faecal Enterococcus appeared again (5th episode of 2018). This time, the doctor eradicated it with BACTRIM (a Ureaplasma treatment, says some), prescribing the patient to take 2 tablets per day for 10 days. They omitted the rest of the treatment due to finding resistance to nitrofurantoin.

About twenty days later, the uroculture showed Klebsiella pneumonia (50,000 CFU/ml) (6th episode of acute cystitis in 2018). The very limited willingness of the urogynecologist to discuss in the presence of some problems/doubts that arose during the treatment led me in December 2018 to change specialists. I turned to an STD professor, gynaecologist and urogynecologist).

December 27th, 2018

On December 27th 2018, after the visit, which also identified a vaginal infection, the professor prescribed a therapy plan. CHEMICETIN: 500 mg, ova for 3 evenings in a row. Then SOAVEMIN – ovules 1 per week for 10 weeks + SOAVEMIN underwear for intimate hygiene. However, as a prophylactic protocol for UTIs, UNIDROX 600 (Prulifloxacin) – antibiotic – 1 tablet per week for 4 months before bed. Nothing else: neither D-Mannose nor lactic ferments, nor laxatives against constipation or anything else.

This therapeutic protocol was followed carefully and briefly interrupted on January 30th 2019. This was due to an acute episode of Escherichia coli (the first acute episode of 2019) with a bacterial load of 1000000 CFU/ml. It was treated with AUGMENTIN (an antibiotic)—1 tablet every 12 hours for six days. Subsequently, my mother resumed the prescribed prevention protocol until the end of April 19th 2019.

The mother, who has always suffered from constipation, counteracted it by self-prescribing regular administration of small doses of SYCON (laxative syrup) until reaching evacuation every day or at most every two days, depending on the dosage. Without Sycon, it was easy to reach even three days of constipation. Also noteworthy as an effect of the treatment is better control of the urge to urinate while awake, with minimal loss of urine during the night detectable in the cloth upon awakening.

May 15th, 2019

On May 15th 2019, however, the urine culture underlined the presence of Escherichia coli with a bacterial load of 1000000 CFU/ml (2nd acute episode of 2019). Apart from the smelly urine, there were no other symptoms of cystitis. At this point, the professor stated that for my mother <<the recurrence of urinary infections is genetic due to the presence of a glue adhered to the cells of the urinary tract, which attracts every bacterium. Therefore, the prophylactic strategy is to change the prevention protocol.

Once the urine culture is negative, you can take one sachet of Monuril a week before going to bed>>. Consequently, the urine culture was negative with AUGMENTIN (antibiotic) – 1 tablet every 12 hours for 6 days, followed, from June 1st 2019, by the intake of n. 1 sachet of MONURIL (antibiotic) per week.

Unfortunately, on 07.23.2019, the patient experienced the third episode of acute cystitis due to Klebsiella pneumonia. The medical team administered ALLGRAM 500 mg (an antibiotic) at 1 tablet per day for 10 days to counteract it, as they had also discovered resistance to fosfomycin.

After completing the Ureaplasma antibiotic treatment and conducting urine tests and urine cultures on August 28th 2019, the medical team detected the presence of faecal Enterococcus in the Enterococcus strain from the faecal sample. Based on the antibiogram, the attending physician prescribed ALLGRAM 500 mg once again. (antibiotic), One tablet per day for 10 days + Cranberry.

Hope

While confused about what to do, I came across the CISTITE.INFO APS ONLUS website. After having “devoured” the important information on cystitis, I decided not to follow the instructions. The doctors decided not to administer yet another fringe Ureaplasma antibiotic. They decided to follow the supplement-based therapy protocol suggested by Rosanna, where D-Mannose is the undisputed protagonist. Other supplements (Immonodefend, Ialuril Softgel, turmeric, etc.) assisted this. In particular, I found the indication of the D-Mannose administration frequency striking. They provide exhaustive explanations regarding this supplement and its effects.

NONE of the doctors interviewed about STI infections so far had been so clear, despite Hippocrates having said to the “medical class” <<Make your patient a doctor>>, in the sense of creating awareness of the treatment and the disease, together with responsibility, to make him a doctor of himself.

After one month and ten days, during which my mother felt well, and the urine smell disappeared, I repeated the Ureaplasma urine test on August 10th, 2019. It revealed Klebsiella pneumoniae with a charge of 1000000 CFU/ml.

Final message

Now, not certain what to do, I’m relieved for my mother’s comfort despite the persistent respiratory other STI bacteria. I aim to persevere beyond this point.

That’s the story of my mother’s cystitis. Though pleased with the outcome, I was not satisfied. My trust in STD-trained Doctors, including professors, waned due to their superficiality and lack of availability. I sensed a tendency to neglect elderly patients, hoping I was mistaken.

If you’ve read this far, thank you for your attention, even on behalf of my elderly mother.