So I am still in pain. Today I am in a lot of pain in fact. So much so that all I want to do is curl into a ball and cry. I was pretty excited the other day. I went to the urologist and he told me that they had missed something on CT scan. That there was a calcification and that maybe that might be what was causing the pain. He did tell me that if it was inside the kidney then it was normal and that wouldn’t be it, but if it were outside then that might be causing the pain. Apparently they had just looked at the scan front on and said it was fine. He showed me that when you rotate it and do something else on the computer you can clearly see there is a spot that is a calcification. I guess in emergency they are so busy that they don’t spend enough time examining the scans. We scheduled a retrograde scan which involves putting a tube with a camera into a very tiny hole. I did get to see what my bladder and kidney look like from inside. Very thrilling. Of course the results are that the thing is inside the kidney and NOT causing my pain. He mentioned that I should talk to my doctor about getting some gynecological work done.
Back in the beginning of all this pain my doctor mentioned Endometriosis but he also said he didn’t think that was what I had. When I was last in emergency they mentioned it again and asked if I had had tests done. I said I had pelvic ultrasounds done and they showed nothing. Now that I know the hospital missed something on the CT scan I am wondering if maybe they didn’t notice any scar tissue or cysts or whatever the endometriosis things look like. Especially since they were looking for kidney things. I also remember that they asked if I had unusual periods and I said no. This is one of the major symptoms of the disease. After reading about it all morning though it turns out that it can first be seen in young adolescents that have heavy unusual periods and they are often prescribed birth control to control the pain and the periods. Now I remember when I was younger I had the worse periods every. I would miss school, I would have to stay in bed, I would have ones that lasted for two weeks or more. I finally realized that this seemed wrong and told my doctor who put me on birth control. I have been on the pill for the last 17 years or so. Now I am reading that since the pill can control the pain the disease often goes ignored until the late 20s or 30s when the women may suddenly experience sever pelvic pain. I have been on support groups and medical sites all morning and most of what these women are describing are what I am feeling. Extreme pain that can come and go in waves, a sharp stabbing pain in the pelvic area like some is twisting a knife into your groin, and pain in the lower back kidney area. So today I am heading back to my doctor for the 5th visit in two weeks to ask about getting tested for this.
One of the other know symptoms is pain during sex. Well we haven’t been very active in that department as of late, but now that I think about, yes I have had pain in the past. I just figured it was from lack of lube or just not that excited and it usually passed in a few minutes. Sometimes I would hurt the next day, but again I just figured that was normal. So now all these things are coming together in my head and I think this is the most likely thing that I have. Apparently most doctors will wait and rule everything else out first before testing for this because if you don’t have all the symptoms they usually have to do a surgical procedure where they go in with a scope to see if there is any abnormal tissue. We have ruled out Crohns, IBS, IBD, Colon Obstructions and now after having the retrograde thingy we know there is nothing wrong with my bladder or kidneys. So hopefully we can get to work testing for a pelvic issue.
In other news the strike is now over, as we have been legislated back to work. While I am excited to be going back I am a little nervous too. I was hoping to have this pain thing figured out before going back, as sometimes the pain is so sever that I double over in pain crying before I realize it. So hopefully we can it sorted out quickly. My two professors already know about the pain since I was suffering from it in September. Well I guess I will just have to wait and see what happens. Here is hoping that maybe this is it. I keep getting excited that there maybe something wrong with me only because it would make me feel better to have a reason for the pain. Have extreme pain, with no real cause is scary and has clouded my brain for the last few weeks. It is all I think about and the pain sometimes causes me to just lie around and do nothing. I am depressed and tired all the time. Luckily fatigue is a symptom of Endometriosis and often women who suffer from it have depression before it is diagnosed because of the pain and tiredness. Lets keep our fingers crossed that there is something wrong with me.
PS. I promise a craft post next, with pictures even. I have the lovely poppy scarf that needs to be shown and some other goodies.