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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?
@cehunt57 Thank you for joining the conversation.
I will provide a little context about bladder exstrophy; in short, it's a condition where the bladder is external, formed outside the stomach area. You can find a detailed description in the Mayo Clinic site (I am not allowed to add any link).
My daughter is followed by a urologist surgeon, but that is mainly covering the surgical area. They provided us with the prophylaxis and the supplement therapy to follow, but sometimes it does not seem effective. The primary doctor instead has no experience with this condition, as it's quite rare. While from a surgical perspective, there are many guidelines, for the rest of the life conditions, I don't find clear indications.
That is the reason I started following this group of discussion, looking for similar experiences and finding good hints
Medicines are prescribed by the urologist, as well as supplements, but with supplements, we have less guidance.
thank you again for sharing your experience
Hi, @dbenini, and welcome. Thank you for taking the time to share Matilde's story. It sounds like she has come a long way!
Here's the link to the Mayo Clinic article about bladder exstrophy that you wanted to share: https://www.mayoclinic.org/diseases-conditions/bladder-exstrophy/symptoms-causes/syc-20391299. I also wanted to share a link to the Association for the Bladder Exstrophy Community: ttps://www.bladderexstrophy.com/.
It's interesting that Matilde experiences bladder irritation during her menstrual cycle and during the summer. I know that hormone changes can sometimes make the bladder more irritated, but that wouldn't explain why she experiences problems in the summer. A lot of women on Connect who have repeated urinary tract infections have mentioned seeing a urogynecologist, who specializes in both the urinary tract and female reproductive health. That might be an avenue worth exploring?
@klp hi Kelly, thank you for your feedback.
I am not sure about the root cause for summer increased pain; I think it's a mix of things, like drinking not so much, being dehydrated, change in the acidity of urine. I also see that the sea water and the sand are often not helping so much. Just as a comparison, while during school season (9 months) she experiences about 2 scenarios needing antibiotics for pain, in summer it might be 1 per month.
Thank you for suggesting the urogynecologist, I didn't know about this specialization, I will investigate a bit more in this direction!