I was diagnosed in November 2013 with IC and I remembered feeling so overwhelmed to start but my urologist and her nurses were excellent and provided me with lots of reading material so that I could learn about this disease.
I chose a really simple treatment route. Because I was having issues with peeing at night (I'd be up a minimum of ten times per night) I started taking a med called hydroxyzine which is basically extra extra strength Benadryl. It helps reduce the inflammation inside of your bladder and also makes you sleepy. It worked really well for me and it made it so I only got up 2-3 times per night and I slept way better!!
My next step was a total overhaul of my diet. I made a Pinterest board and started pinning as many IC friendly meals and snacks as I could. I printed out really simple charts that listed what foods were IC friendly and which were going to make me flare. IC is something where you really do need to change your diet if you want some relief. You need to eliminate anything acidic...so coffee, pop, tomatoes, annnd apparently that's all I can think of at 1am 😂. I promise you it gets easier though!!!
I found some really helpful support groups online just by googling IC support groups, and I also ordered a couple of books and cookbooks.
Some people find relief having "bladder instillations" but I haven't had to go down that road yet so unfortunately I don't have anything helpful to say about those, sorry!!

Honestly I would just start googling "what is interstitial cystitis" "interstitial cystitis diet" and "interstitial cystitis friendly meals" and see what you come up with!

The saddest part for me was eliminating coffee....and wine. But don't worry! There are low-acid coffees available to buy AND you can drink other alcohol. You kind of have to go through a trial and error period with your bladder to see what foods you can eat, what you can drink, or what is going to send you into a "flare." A flare is different for everyone but for me I consider myself to be in an IC flare when I notice I'm urinating more than usual and it feels like I have the world's worst UTI but there is no infection.

I don't know if any of this has been helpful or just mostly overwhelming! I apologize if it was too much at once. I'm new to this website so I'm still learning my way around :).

Good luck though! You've got this!!!

- Jane

@A MyEndometriosisTeam Member Thank you so much! That was super helpful and gave me some direction going into the appt. Ive started three new medicines, the incredibly bland diet, and weekly appointments for some bladder therapy. I will be going in for a catheter procedure every week to put medicine directly in my bladder. It's a lot to be hit with but I am super excited to have some answers and have something to work towards with that as endo treatments don't really treat the illness but instead supress symptoms where this with IC treatment seems like it will actually diminish the issue and start really helping, if that makes sense. I'm ready to start feeling better.

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