Is anyone's life the same after this diagnosis?
You might be dealing with spasms in the muscles...you might try doing some gentle abdominal massage on yourself (or see a pelvic floor physical therapist) my belly button muscle spasms are from having surgery placing the scope through my belly button many times over...so I have adhesion's but what helps me when this is happening is to place my thumb in my belly button and lift the skin up, stretching gently all the way around the belly button...I do this every morning and every night...you might also try a heated rice pack on the area because this calms muscle spasms...
life is always changing and this is a hard disease to deal with but if you do not feel your is being managed well enough that you are able to live life fully please seek the opinion of another dr. or several dr. until you get the pain better managed...I had mine under control for years...but it ebbs and flows...figure out your triggers and change/modify them to help your body feel better!
My life is very much changed from my health, but it's still a beautiful life!
Don't give up!
I haven't been diagnosed with IC but think I do have it. I get navel pain. There is a reason for this biologically. The foetal bladder was drained via the umbilical cord and umbilicus. It all developed from the same tissue in the embryo so that is why bladder pain is felt as referred pain to the belly button. If you press round the belly button you will find it doesn't increase the pain. There is no organic structure near or behind the belly button causing it. It is referred from the inflammed bladder because of the embryonic connection.
"A fetal canal connecting the bladder with the allantois, persisting throughout life as a cord (median umbilical ligament). adj., adj u´rachal. patent urachus a condition in which the urachus remains a hollow tube connecting the bladder and the umbilicus, resulting in an umbilical urinary fistula."