IC Medications?

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I am newer to IC and have been dealing with the pain since October 2017. I was diagnosed about a month ago after seeing 6 different doctors and pushing doctors to do different tests until I found a knowledgeable urologist who diagnosed me without me even mentioning IC. My urologist told me to try an IC diet and will go from there. I've been trying an IC diet for about two months while testing different acidic foods here and there to find my triggers. I have good days and bad (mostly bad) during this 8 months I have had two bad flares that have lasted a month and a half to two months just awful not one day of relief during thoughs times.

My question is has anyone tried Elmiron or any other medication and had any luck? At this point I have tried a couple natural remedies such as Marshmallow Root, Freeze Dried Aloe Vera, and Prelief on low acidic diet. Marshmallow Root gives me some relief when I am in mild pain but when I am in my worst pain mid flare it does little to nothing. Freeze Dried Aloe Vera (Desert Harvest brand) seemed to make me worse unfortunately as I was hopefully since it helped so many. It could have been something else since I only took it for a few day but that was the only thing I can pinpoint that changed in my diet at the time.

I am wondering if medication is worth suggesting at my next appointment or if it is also a hit or miss like these remedies? 

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  • Posted

    Hi Amanda- I too have been suffering for the last 8 wks and have nothing to suggest. Ive also been on percocet and  even opiates don't make it go away. Im scared and clueless. This is my first flare, and figured out myself with confirmation from a uro-gyno that my diagnosis is correct. Is this our new lives? 

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    • Posted

      Victoria, I am sorry to hear you've been in so much pain. It is truly awful and i've found a low acidic diet and lots of water to help only slightly. I have also realized my flares come from stress so I've been trying stress management but you know that only goes so far. I am hoping to try Elmiron as I hear it helps some.

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  • Posted

    Hi, Amanda! Sorry that you've been in a bad flare for so long, it's so frustratingly painful. I was diagnosed with IC in September, started the diet right away and Elmiron in November. I noticed slight improvement after the first week of the diet and realized some of the "safe" foods weren't safe for me, mainly garlic. You really need to experiment (carefully) and be patient. Have you tried cutting out processed foods, preservatives and dyes? You may need to really pare down your diet, at least until your bladder calms down. I noticed more improvement after two months of Elmiron and it's gradually getting better. The most and fastest relief has actually been from physical therapy. The urgency isn't completely gone but much better and sometimes I can actually wait 3-4 hours between bathroom trips! I can't sing the praises of pelvic PT enough and would encourage anyone with pelvic issues to try it (urinary/bowel/sexual disorders). Also, are you drinking enough water? Take your body weight, divide it in half and that's how many ounces you should drink daily, most of it by 6 pm. I hope this helps and that you find relief soon.

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    • Posted

      Thank you for your reply! I have been drinking lots of water and it does help some. I've been trying to get an appointment with a PT for months now. Unfortunately there is only one in my area for pelvic floor and they favor returning patients when making her schedule but I am going to keep trying. 

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  • Posted

    Hi i am like you just going with the flow trying to find anything that will give me some relief.  I have had no luck so far.  What diet are you following is it a special site I am looking for a good ic diet.  Wish I could be of more help.
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    • Posted

      Hello Pam I am sorry you are in pain it is a long road of trail and error. I have been following this https://www.ichelp.org/wp-content/uploads/2015/07/food-list.pdf which is similar to the list my urologist gave me. It is hard to stick to it and is taking awhile to figure out my personal triggers as everyone is different. For example I recently realized I am effected little by regular sliced tomatoes but feel a lot of pain when I eat marinara. My biggest trigger I have come to realize is not food related but stress related so I have been trying to manage that and it has helped my pain some. I am hoping to see a pelvic floor physical therapist unfortunately there is only one in my area that is always booked. That could be something else you can look into.    

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  • Posted

    i Hi  I am on my 2nd month of elmiron not sure if its helping yet they do say it can take as long as six months for it to work.  I also do the DMSCO treatments at the hospital helps somewhat I expected more from them.   Some women I hear do well with the treatments.  So far pain killers and spasm meds, the CI diet does the most to help..  I am waiting to see a gyno regarding hormone replacement therapy  to see if that works.sorry your having a hard time welcome to my world.  I will keep you up to date  if I find anything new.  There is not alot in terms of drugs I found a good site to look at is the mayo clinic and what they offer for IC..  Good luck to you and best wishes.
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