About 6 months ago I stopped going to our support group meetings. Mainly, for two reasons- One, I felt pretty good most of the time, and being there made me feel sorry for the people in pain. Two, because the group is at a Urology group different from the one I use for IC treatment, and I decided I was tired of hearing people slam my doctor.
At first is was just a mild annoyance, but it started to add up, and it made me start to think negatively about my Urologist.
Thankfully, my husband was there to be my sounding board, and we were able to figure out why I was annoyed with the meetings, and why it was better that I not go. We also discovered that my doctor has helped me so much with me just following her advice, and that it was worth continuing to use her for my Urologist.
When I first saw my Uro, she recommended the diet, but I had already been following the diet on the advice of a different Uro, and it had not made a significant difference in my life. She was the first person to reveal to me that not ALL IC patients find relief with the diet. That was news to me. And it may be news to you! Diet can play a huge role for some patients (probably most- about 80%) but there are also patients who can see no difference in following the "Safe" list on the IC/PBS Diet guidelines. She told me that the next step was to try medication & gave me a script for Elmiron.
I know there are a lot of IC patients that will preach the horrors of the medication. I am NOT one of them. I think that it is a costly drug, but used in the right patient, it is also a HIGHLY effective means of controlling IC symptoms.
I'm one of the weird people who read the entire list of drug warnings, side effects & interactions. It can be enlightening. First of all, Elmiron only helps about 25% of the patients who take it. So right off, from the bat, you only have a 1 in 4 chance it will help you. So if in 6-12 months you don't find any relief from using the drug- probably best to stop it & try alternative means.
Also, 27% of patients experienced at least ONE side effect, ranging from diarrhea to hair loss. Bruising is the main one, due to Elmiron's anti-coagulant properties. I have some bruising (though it is a weird hybrid of bruising and not even a hematologist could explain it) and I've experienced some hair loss. But I've also been able to get my life back, and it is worth that little bit of hair that is now gone!
My doctor put me on an off-label dose of Elmiron, and it worked. I went from discussing disability with my Primary Doc to being able to continue both my jobs with confidence, AND start a business!
My Uro, after 6 months of being on Elmiron, told me two things that I also find especially enlightening. First of all, since not much is medically understood about IC, I am one of the best judges when it comes to figuring out my maintenance dose. She has let me tweak the dosage to what works for me, and she was also the first person who recommended I lower my dose. She actually told me that the lowest possible dose was best, because even though it has been a life saver for me, it is still a medication, and should be only used as needed.
Then she told me about walking. I will forever be grateful that she told me about walking! I was walking occasionally, but not really putting much effort into it. She explained how walking is one of the best steps in physical therapy & really helps loosen the pelvic muscles. I didn't realize exactly how important that was until I was sent to my Physical Therapist & she practically did a cartwheel when she found out I (at the time) was walking 2 miles a day! Walking is something that she highly recommends to add to the PT regime because it is easy to do, and anyone can do it. It is a very good step to "Breaking the pain cycle".
Since I started walking I am now up to 3 miles most days, and if I skip even one day I can feel the effect. All in all, I am so grateful to my doctor for helping me get my life back. And I'm tired of people hating her. I followed her instructions, and I am in a much better place for it.