Jul 30, 2009
What a journey of frustration this is continuing to be.
A month and a half ago I started having some vague abdominal pain, bloating and gastrointestinal and urinary issues. I was worried it was another cyst or something to do with Lupus. Both he and I are concerned about my severe anemia. GP insisted it must be something related to my bowels and my J-pouch surgery and mused that he should send me to my surgeon in Toronto. He ordered a CT. Ends up nothing noted except for a 2.5 cm cyst on my remaining ovary and fluid in my uterus.
We needed more information on the cyst so set up a gynelogical ultrasound. Went for that and cyst is down to 1.5 cm and simple. No cause for concern. Issues are continuing and increasing in pain. Pain is concentrated on right side, around back with some twinges in my upper abdomen and on the left. I faxed my bloodwork from my Rheumatologist to GP wondering if the results showing renal issues might be causing issues. Normally 3 positives are required before a definitive diagnosis of renal disease is considered. GP says no and muses again about sending me to surgeon in Toronto. My fatigue is getting worse too so I ask him about doing an occult blood test and he agrees.
Abdominal pain increases with off and on diarrhea, nausea and stools that are sometimes clay like or green (and is not due to my diet). I head back to doctor once again (I am there every week now). The nurse practitioner sees me. My urine is good. She talks with GP and he says he wants to send me to surgeon in Toronto. I ask if I should be making arrangements since he's been saying this for some time and am assured they are taking care of it. Because of my symptoms I ask for another ultrasound to check my gallbladder. She argues and then gives in.
Went for ultrasound 2 days ago and when they hit the gallbladder, liver and pancreas, that is where the pain was. I also call my rheumatologist telling him that I am having a tough time. He calls back and asks if my GP is doing all the tests he asked him to since he is concerned about my anemia and that I may be bleeding internally (he wanted a complete work up done - endoscopy, colonoscopy, etc.). I am livid that this has not been commuinicated to me. Rheumy tells me to push hard. I also put a call into surgeon's office to move getting an appointment along.
Heard from surgeon's office this morning that they did get the referral from my GP and that surgeon was looking over my file. Only problem is that she is leaving for holidays next week so no appointments until September. I am hoping I can see another doctor there. I do know my GP probably wants her office to do all the testing because of the previous surgery and my unique body part situation as a result.
Feeling worse today. Running a fever, lots of pain, confusion, dizziness, and a feeling like I've been sedated. Took a couple of hours of nap and feel slightly better. Called GP's office and ultrasound came back normal. Now I am in tears and so frustrated. I'm missing work (no sick time) and am in so much pain and so scared. Tomorrow I will call and get back into GP and time for a heart to heart. We have to figure out what the hell is going on here! Everyone is afraid I'm bleeding internally. For God's sake let's do something!!! The Lupus pain (still not absolutely diagnosed) is bad enough without this. And nobody is testing for vacultis in my gastro area due to Lupus. See my rehumy in 2 weeks and see optometrist next week in lieu of the Lupus drugs and my blurry vision.