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Managing cyclic & seasonal symptoms in bladder exstrophy
Hi,
my name is Davide, and I am writing from Bologna, Italy, regarding my 16-year-old daughter, Matilde, who was born with bladder exstrophy.
Following her previous surgeries for bladder exstrophy, Matilde has achieved good bladder function without undergoing bladder augmentation. She is quite continent, has reliable nighttime awareness of her bladder, and urinates without difficulty.
Current daily regimen:
Prophylaxis: Bactrim 800 (half capsule/day. Recently switched from Nitrofurantoin 50 mg.
Spasm/Continence control: Oxybutynin 5 mg.
Supplements: D-mannose and cranberry daily.
This regimen generally works well. However, Matilde frequently experiences a burning sensation that correlates directly with her menstrual cycle and the summer months. During these episodes, urine tests reveal bacterial growth, which we treat short-term with targeted antibiotics.
To address the hormonal triggers, she is currently taking an oral contraceptive pill. We intend to transition her to an extended-cycle regimen (one withdrawal bleed every 3 months) to minimize cycle-related symptoms.
Because we do not have contact with other bladder exstrophy patients locally, we are seeking external expert guidance.
Is there an established protocol or advice for managing these isolated breakthrough symptoms during hormonal peaks or seasonal changes in BE patients?
We are transitioning from D-mannose in tablets to powder, as I think it will be more efficient, but other hints would be great!
Thank you very much for your time and any insights you can share.
Best regards,
Davide Benini
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I realize I didn't indicate tlall the doses.
D mannose is 1700 mg per day, cranberry is 18 mg PAC per day
@dbenini I don’t know what bladder extrophy is and couldn’t find it when I looked it up. I and my 15 year old granddaughter both have bladder conditions that we have struggled with for years. When issues pertaining to the menstrual cycle are added to that, things can be even more difficult to deal with. I think this must be especially true for young teenage girls.
In the past if I’ve experienced a “burning sensation” it has been associated with a urinary track infection (UTI). I’ve never noticed any correlation with the menstrual cycle or the seasons. All I can say about that is to be extra vigilant with proper hygiene in the summer months. There may be female products (pads, tampons, powders/talc, ointments/cream, sprays, soaps, a soaking bath with vinegar added to the water, douches…etc) that could help to stay clean and dry during the cycle). Some have found that all cotton undergarments are helpful rather than synthetic material. Another possibility to consider is a vaginal yeast infection. If that is the case there are many treatments and remedies for that. Does your daughter have a primary doctor that is experienced in treating adolescent females? She could ask that provider for recommendations regarding treatment. (You said that you don’t have a urologist with experience in bladder extrophy.) Who prescribes the meds and doses for the “Dailey Regimen”? Maybe she can ask that provider for recommendations regarding the symptoms she is having?