Need advice on pain control/dr issuses

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daynanicholle
Regular Member


Date Joined Jun 2005
Total Posts : 31
   Posted 1/30/2008 2:11 PM (GMT -7)   
Hi everyone!  I've been reading the posts on this forum and thought that someone here might have some advice for me.  I have UC so I'm also on that forum.  I've been having a lot of abdominal pain that has been going on for almost a year.  I know it's not my UC flaring since I have no UC symptoms. Late last Feb/March I started having abdominal pain and feeling like I had a UTI.  I had just started a new job so my insurance hadn't kicked in.  Then I found out I was pregnant and attributed it to that.  At about 12wks preg I started having similar symptoms, went to the ER and found out I had kidney stones.  Ended up having a stent placed and also lithotripsy.  I continued to have some abdominal/low back pain and constant UTI's and was on antibiotics and the occaisional Vicodin for pain.  I gave birth in Nov and since then I have had three more UTI's and constant pain.  My OB has ruled out anything gyn in nature and suggested I see the Urologist again and that if I was having pain or needing pain meds to go thorugh my PCP.  I have state medicaid now and was assigned to a PCP of their choosing I also must have a referral to see a specialist.  I saw her once, was told it was a back strain and to take motrin and flexeril and would not refer me to the Uro.  I told her I can't take Motrin (or any other NSAIDS/aspirin) due to having gastric bypass surgery and UC.  She said that wasn't a reason to not take it and I should just eat with it.  I called my insurance and they allowed me to switch PCP's but there are only a couple in my area that are taking new medicaid patients so I'm really limited.  The second guy I saw basically said the same thing but did do blood work, another urine and ordered a CT but won't refer me to Uro.  A couple days later I'm in so much pain and having nausea and vomiting that I go to the ER.  They don't find anything wrong but did give me something for the pain (oxycodone) and told me to follow up with my PCP.  I told the ER doc what was going on and he offered to call my PCP and encourange him to refer me to uro.  The next day I went to my mom's house about 2hrs away so I could relax and get some help with the babe (I'm a single mom).  When I came home yesterday (tues) I had a message from PCP that they made me an appt. with Uro for Monday @ 8:45am.  Well obviously I missed it since I wasn't home.  I call PCP back and she tries to reschedule the appt but my Uro is really booked up so she says his nurse will call me.  This morning I call the Uro and can't get in till Feb 18th.  I call the PCP and my doctor tells me there is nothing he can do for me, that they went out of their way to get me the appt and I missed it so I need to talk to them.  I tell him I can't get in till the 18th and that I'm willing to wait but can he give me something to help the pain since tylenol doens't work.  He again says there is nothing he can do, I ask him if I can come in to see him and he tells me he doesn't know what I expect him to do but if I wan't to be seen by him I can come in.  I ask if he can see me today and he says no, call Friday and maybe he can see me then.  By this time I'm frustrated and in tears and don't know what to do.  I call my insurance and talk with the care coordination person and she is very nice but doesn't really do much to help.  At least they have on record though that I'm trying to work with my PCP and not having luck.  I am really miserable but it seems like the doctor's don't take me seriously since I don't look sick and I don't act like a person in pain should act.  I don't scream and wail in pain and I'm able to do things because I have to but most days I dont do anything because the pain just wears me out.   I hate going to the ER because I dont want them to think I'm a drug seeker but they are the only ones who take me seriously.  The ER doc I saw last week had mentioned I might have Interstitial Cystitis and after looking it up online it does seem to match my symptoms.  My CT last week was normal and I have had two normal urine tests.  So I'm trying to decide if I should go back to the ER (the same hospital where my Uro works), wait till I talk to the Uro's nurse, wait till Friday and try to see PCP and see if I get anywhere......what would you all do?
I really appreciate you taking the time to read/respond I know this is long.

Centurion
Regular Member


Date Joined Jan 2008
Total Posts : 28
   Posted 1/30/2008 7:25 PM (GMT -7)   
Honestly just keep looking till you find a doc that actually listens and is helpful...

hazelB
Regular Member


Date Joined Jan 2008
Total Posts : 114
   Posted 1/31/2008 2:33 AM (GMT -7)   
Please go to a Urologist who can do a cystoscopy to test for IC. I have the pleasure of having that diagnosis and it can cause a devesataing amount of pain. Your story sounds very similiar to mine. ER's tons of Docs no dianosis in sight.
If you need to know anything about IC please feel free to ask, my thoughts are with you I know how frustrating it can be.
Hang in there!
 Interstitial Cystitis and Endometriosis


hazelB
Regular Member


Date Joined Jan 2008
Total Posts : 114
   Posted 1/31/2008 5:52 PM (GMT -7)   
Oh I missed a part in your post...if its too long you can always try and get in with another Uro, maybe someone else can see you faster. Just keep doing some research so you can go in prepared. Alot of Urologists are still not up to date on IC. Some rule it out before even doing the actual tests...but if you really feel like you have most of the symptoms and you keep getting urine tests that show no bacteria then press for an actual cystoscopy and if they dont want to take you seriously keep getting different opinions from differnt docs. I took me a year and 3 differnt speciailists until someone actually listened to me. Dont let anyone make you feel like nothings wrong if you feel that there is. Its your body not theres. Try to tell your PCP that you are having a very difficult time with the pain and waiting for the appointment is torcher. I heard someone say on the forum asking if there refusing to help treat your pain can help turn around there attitude.
 Interstitial Cystitis and Endometriosis

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