I'm sorry to hear you're suffering so much. So many of us with IC are not helped by our doctors and not understood by our friends & family. I've been diagnosed with IC for 15 years now and I can offer some suggestions for you.
My first recommendation is that you get a new doctor as soon as possible
. No one
should deny you pain medication. If you spoke to the nurse or nurse practitioner, then demand to speak to the doctor. If this is your specialist, then go to your primary care doctor and get a prescription for pyridium or Elavil to help with your pain. (There are probably stronger meds also but I've never had to go on them.) If, on the other hand, you've never seen a urologist, request a referral as soon as possible because your doctor clearly doesn't know what he's doing.
In the meantime, you can try a few things on your own to help with the pain.
- Invest in some Prelief -- It's an acid reducer that you take BEFORE you eat.
- If you forget to take your Prelief before eating, you can use a couple of Tums Ultra afterwards which may bring some relief. (Be careful not to take too many Tums as they might alter your body's pH balance and give you a yeast infection.)
- You can take warm baths with something non-chemical like oatmeal to ease a bit of your back pain. (CVS has some store brand oatmeal bath soaks that are quite good and help relieve dry skin to boot!)
- I've never used a heating pad but some people with IC swear by them. Put it on your back or your front pelvis to see if it helps with the pain.
- Any time you like, but particularly at bed time, you can mix a cup of water with 1/2 teaspoon of baking soda and drink it all down to help with night pain/urgency.
- And speaking of water, many bottled or filtered waters come out too acidic for us with IC to drink. I drink tap water, as many others do, and have fewer problems with it than when I drink from my Brita pitcher.
- Whatever you do, do NOT eat/drink cranberries!! All of the "conventional wisdom" about bladder infections will only give you PAIN if you have IC.
I hope this helps, even just a little bit. Most of this should've been offered by your doctor as ways to help you cope, so getting a new doctor is imperative if you can do it. I hope your pain decreases soon.