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For me, they get worse just before and during my period.
Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.
Current medications/treatments: Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths
Previous medications/treatments: Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek
The week before was the absolute worst time of the month for me for both my VV and IC symptoms. THe week during was my best time of the month but I was still symptomatic. And as soon as my period ended, things would start building again. Just a vicious cycle
My symptoms are terrible at that time. I suffer terribly with my period and it seems everyting is inflammed which makes my IC symptoms bad at that time. I find mine starts a few days before my period and end a few day after. I'll say like Briza only to start all over again each month.
Daughter your faith has made you well,go in peace, and be healed of your disease.(Mark 5:34)
Tried: Detrol:only took one pill and it made me sick Elmiron:caused horrible pain(took 1 week) CystaQ:caused alot of burning and pain(only took one pill) Wellbutrin:only on it for three days as it caused alot of bladder pain Elavil:Took one pill and it caused a flare that lasted almost two weeks. It was the longest flare I've ever had. Never again..ouch Prelief:made my bladder burn and feel tingly.
Take: Uracyst:Started May 19 2011 Enablex:take one pill daily with no issues Naproxen:for pain as needed Baking Soda with water:as needed and it's a God send. It brings down my pain within 20 mins. Venofer: Started April 2012 by IV for low Iron. I do not tolerate oral Iron so this is the route I had to take.Does not bother my bladder but did have other side effects. I take Benedryl with each treatment to avoid side effects. Supplements:Whey Protein powder daily Dessert Harvest Aloe It has been helping alot but I can only take it every two days as my "die off" reaction has been severe.
IC diagnosis 3 weeks ago.
Vesicare 10 mg once daily
IBS and Gerd-Zegerid
IC diet
Elmiron 100 mg three daily
Hydroxyzine 25 mg at night
Amitriptyline 10mg at night
Diovan 60/12.5 daily
Topral 50 mg daily
Zoloft 100 mg at night
Klonopin .5 twice daily
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-Amanda
34 years old, bladder symptoms all my life
diagnosed with PFD and VV October 2009; IC May 2010
Current meds:
Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Gabapentin 600 mg, Myrbetriq 25mg, Zoloft 25 mg, Mircrogestin, capsaicin cream (for vulva)
Other past treatments:
IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
Tried and didn't work:
Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture
I have had this problem before. Plus, my periods were really long and heavy which didn't help. Now, I take birth control pills and we tried out quite a few, but it was worth the effort because now I'm on pills that make my period extremely short and light, and I really don't have physical symptoms anymore (like cramps, bloating, etc.) This has helped my IC, esp. my IC pain tremendously. Something like this may be worth looking into, though I know going on BC pills is not an option for everybody.
Have had IC symptoms since childhood, but did not seek serious treatment or become diagnosed until I was in college.
24 yo F
I've had a cystectomy with an Indiana Pouch. It was a success and has helped my symptoms and pain immensely.
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