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Pain question
trbecker5 posted:
I have intercystistial cystitus aka painful bladder sydrome. I have had it for about 4 years. The pain has gotten much worse over the last year. I have a problem finding a doctor that even knows anything about what I have. It is now affedting my daily life. I have an appt with a pain mamagement doc tomorrow and as normal I am very stressed about it. Does anyone have any tips to make my appt be a productive one?
annette030 responded:
I assume a urologist has already done all the testing necessary to diagnose you with IC. I would take copies of all that with you along with medical records that show what you have already tried as far as pain management. That way the PM doc knows what you have already tried and can start from there.

A pain diary with pain scores and medications, etc. would also be useful.

Of course, waiting until the appt. is tomoorow is kind of too late for that. You should have asked this question as soon as you made the appt.

Take care, Annette
cybil53 responded:
I know your struggles I too have IC, along with fibro and a few other things. I went to 3 Urologists before I finally got some help. I now drive an hour to my new urologist but it is worth it. My advice is to see a Urologist that knows about and treats IC, the first 2 I went to didn't know what to do for me. Go On the National IC site and you can find a Urologist that treats IC in your state. My Urologist has written articles and was a guest speaker on this site, I really like him but he is in Michigan not sure where you live.

Are you on anything for your IC? I take Elmiron for pain, anti spastic med and muscle relaxers. I just had surgery where he went in the bladder (Cysto Hydrodistention & Retrograde Pylegram) and looked for the hunner ulcers that we have and he cauterized them, took a couple of biopsies and put some med in there to calm things down for a while. My bladder when I am really bad is full of hunners ulcers and I bleed not too mention the pain I have all the time.I am also going for Physical Therapy for Pelvic Floor Muscle disorder which many people with IC have and don't know it. So you see you really need to go to a doctor that knows all about IC many Urologists don't. I know how you feel it effects your everyday life. I feel very hopeful that this doctor is going to help me. There is no cure for IC but they can make us more comfortable and better equipped to handle it. I hope this helps and you will get a lot of good info from the site I mentioned. If there is anything else I can answer for you just post me a message. Hang in there I feel your pain! Try to have a good day!
trbecker5 replied to cybil53's response:
Thanks for your reply. I am on Elmiron, nuerotion, and a muscle relaxer. I still have the pelvic pain. It gets really depressiom because not many proplr hae even heard of it. when I go to the Doctor they told me that they havr only 5 other patients with IC. This is a fun condition to have.

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