Jan 11, 2006 - 4:37 am
March of 04 I have a hysterectomy because of endometriosis and large fibroid tumors that were causing me a great deal of pain. I requested that my ovaries be left intact as long as there wasn't any medical reason to take them. At that time I had no reason to suspect I had cancer and the word was never mentioned.
For about a year now I've been experiencing vague symptoms including abdominal pain, fatigue, gas, bloating, and most recently painful bowel movements and occasional bowel incontinence and urinary incontinence. I've had a transvaginal tape (Nov. 02) and do my exercises quite often so the urinary incontinence was particularly disturbing especially since it seem to start happening all of a sudden. The abdominal pain has been getting worse as has the gas and though I wouldn't have thought about it as a symptom I did notice that my waist had expanded quite a bit.
Fast forward to today. I finally decided to go back to my OB/GYN and based on my symptoms and research I was quite sure I had at the very least a recurrence of the endometriosis. However, I also had this funny feeling that it might also be ovarian cancer. My OB/GYN did an exam and poo pooed both my diagnosis (since I no longer have a uterus how can I have endometriosis again) but just to humor me did a CA-125 and scheduled a sonogram. Today I got the results and found out my CA-125 came back elevated. After getting over the initial shock of what that could mean (yes I do know there is a high rate of false positives) I called back to move my sonogram forward as it wasn't scheduled for another 3 weeks. As it is I'm still going to be waiting another week and a half for it. When I called to move the appointment up I was told that my Doctor said it wasn't necessary but they did it anyway at my insistence. I don't know what the levels were and though I'd love to call back and ask I'm afraid to because at this point I feel like my doctor isn't taking this as serious as I am. I don't have any family history to look at because all the women in my family have died in their late to early 40's (all cardiovascular diseases) with the exception of my mother. She had the whole enchilada removed when she was 27 so if there was any history to look at I'm not likely to know.
So in the meantime I'm going crazy here and all the research isn't helping any. Frankly, I don't know if I trust my doctor to make a correct diagnosis since she doesn't seem to be taking this serious. I realize she isn't suppose to be an alarmist but at what point should she be taking it seriously? Am I blowing this out of proportion? In my mind, she should be doing every test possible as quickly as possible until she can prove definitively one way or the other that I do or don't have cancer. Am I being unreasonable? Should I keep pushing and insisting? What kind of test should I be having? When should I insist on seeing an gynecological oncologist? Should I insist on a biopsy based on one elevated CA-125 reading? Should I get another reading? What did some of you go through when you were first being diagnosed? Did you feel like no one was listening to you? I guess I'm just looking for some reassurance here that everything that can be done is being done. Any feedback here would be appreciated.