Post # 1
Hi Bees! I was wondering if anyone here could give me some information about IC and their experiences with it. I’ve looked at some older posts, but I wanted to see if there was anyone else active who is going through this.
I’ve been ‘diagnosed’ by my urologist, but I’m going to be getting a bladder distention in a few weeks to 100% diagnose/bring some immediate relief. This is my question — when we talked, she said that I’d go on a course of Elmiron for anywhere from a few months to few years. Now that I’ve done my research, I’m not feeling too sure about Elmrion… some of the side effects are scary and not worth it to me.
As far as I know, my case is moderate to mild. I have very intense flare-ups (to the point where I can’t sleep) but they only come 1-3 times a year and last anywhere from 1 hour to 2 weeks.
Can anyone tell me about their experiences with the distention, Elmiron or any other alt. treatments related to IC? Thanks!
Post # 4
I don’t have IC, but I am a nurse and have know patient’s with it. I am sorry you are going through this, it always sounds so painful.
Post # 5
Hey this is way late, but I have Interstitial Cystitis and have some info! Fist of all, how did the hydrodistension go? When I got mine it unfortunately did not bring me any relief, but I hope that it did for you! I remember that they also wanted to give me elmiron, but after researching it I decided not to take it because of the side effects. I’m not sure if this is true for you, too, but having IC also caused me to get vaginismus because of painful sexual intercourse. So, I started physical therapy for vaginismus in which they have you use vaginal dilators to stretch and relax the pelvic floor muscles, and I only expected this to help me with my muscles, but it has also greatly improved my bladder pain! She explained to me that basically having vaginismus causes you to tense up your entire lower region (including bladder and digestive area), and learning to relax your pelvic floor muscles also helps you learn to relax your entire lower region, and therefore my bladder has relaxed quite a bit.
Have you changed your diet? Diet is a HUGE factor in flare-ups, and for me personally I do not have caffeine, and drink alcohol only once in awhile. I also watch how much citric acid I am intaking, and this has worked wonders! The only time I ever get flare-ups anymore are when I am super stressed with school, so I just make sure that I am on top of my stretches during those times.
I also have seen relaxation cds designed specifically for those with IC, like the ones you see here. That website is also full of general informationk, support networks, products, etc. that are very helpful for IC patients. I have not tried using the CDs because personally my change in diet and physical therapy has proved to be sufficient for me, but I thought that you might be interested.
This might sound silly, but another thing that has helped me greatly has been a change in pants haha! I used to wear low-rise skinny jeans, but I realized that they were causing tension on my bladder, so I now wear mid-rise jeans and this has helped me greatly!
This is all I can think to post for now…but feel free to ask more questions or PM me! I have been dealing with IC for about 3 years now and live a normal, nearly pain-free lifestyle. To be honest it will be a time for trial and error – I learned what I could and could not eat and drink by eliminating many things, then one by one bringing them back in. After time you learn what you can get away with (for instance I can drink every once in awhile and have no flare-up aftermath). It just continues to get better with time!
Post # 6
@MsMonkey: Hi there,
I’m really new here, but I wantes to reply to you and tell you that I am here if you are still here and want to talk/ask questions! I am currently in the process of being diagnosed with IC. I have had symptoms for a year and half now and finally found a doctor who might know what he is talking about. I wasted so so so much time with doctors who kept putting me on different antibiotics and it was incredibly scary/frustrating.
So far this new doctor advised that I go to physical therapy for pelvic floor dysfunction. It seemed to really help! However, my insurance just pulled out and I can no longer afford it. I also cut out coffee and most almost all drinking. Otherwise, I have actually just been self-medicating with benedryl and AZO. The benedryl weirdly takes my symptoms down a notch. I am seeing this dr again in a week and I am planning to ask if there is something that might have a similar effect without making me sleepy. I am a PhD student and teach 2 undergraduate courses. I can not afford to keep sleep walking through my work days (not that anyone can).
How are you dealing with wedding planning while sick? It is definitley keeping my mind off of things! My Fiance and this wedding is holding me together. I’m just very nervous about how I will feel the day of the wedding. We are having a destination wedding and flying is definitley not good for me pain wise. Ah.
Sending you lots of support and good wishes 🙂