I am 32-years old and live in Las Vegas, Nevada, USA. I don't smoke and I excercise. I did my first sprint-distance triathlon at age 30 and love to train for the sport. One year ago (Nov. 2005) I had my first abnormal pap. The indications were moderate to severe dysplasia. My Doctor immediately brought me in for a culposcopy and the results were that it was a "false positive." I'm sure you know this is very odd for a pap to find abnormal cells and for the follow-up culposcopy to find nothing. I wasn't even positive for HPV.
I went in for my follow-up pap in April 2006, thinking very much that I was just going through a routine - this time the pap was LSIL with some severe dysplasia. My doctor performed another culposcopy that confirmed the pap and that I was positive for HPV. I had a LEEP procedure within 2 weeks that found CIS - but the margins were "clean." My doctor was confident the situation was handled - after all 90% of patients are treated with this procedure.
I went in for my first post-LEEP pap in August 2006. Results came back LSIL with mild dysplasia. My doctor was extremely alarmed that I had an abnormal pap so soon after my May LEEP. I was very disappointed and alarmed as well. My trust in the "normal" procedures was lacking. The normal protocol would be to perform a culposcopy and if it was just LSIL with mild dysplasia, then they would wait 3 months and test me again. Since the culposcopy I had in Dec 2005 had given me a false negative, I was not willing to take that chance again. My anxiety had reached a whole new level even though I was going to counseling. I requested and my doctor agreed to perform a total hysterectomy (complete removal of uterus and cervix) in October 2006.
My hospital stay was only 36 hrs and since it was performed vaginally, my recovery was very smooth. I kept my ovaries, so there was no hormone adjustments. I did not have any infections and no post-surgery complications. The results of my pathology confirmed the pap: LSIL with mild dysplasia - clean margins. I had a surgery that is usually reserved for stage 1 cancer when I only had mild dysplasia. I felt confident that this was behind me.
My extremely cautious doctor requested I have one more pap in Jan 2007 before returning me to yearly exams. I was pretty upset with her - the waiting 2 weeks for another pap test so soon was very difficult for me - my anxiety about my health really takes over my ability to enjoy life while waiting for the test results. However, it's a good thing it was up to my doctor to have another test ... I may have blown it off just to avoid the anxiety alone.
I found out last week (Jan 18th, 2007) that the pap on the vaginal vault was LSIL-H (low grade squameous intraepithelial lesions - can not rule out high grade) - same as the result on my cervix last May. My doctor (gynecologist) has now referred me to a gynealogical oncologist. Not because I have cancer, but because she feels the oncologist might be able to do more for me so I don't develop cancer.
I am extremely frustrated because it seems that I'm way outside the statistics. It is very difficult to feel confident when you can't really believe the test results all the time. I'm scared and don't know how to let my new doctor do his job and feel confident about my future.
I feel very lucky to have had this pap test so soon after my hysterectomy and that I have several options for treatment of my vaginal dysplasia - but realizing that cancer could be in my future is frightening and I'm terrified. I have a great group of friends and family, but no one really knows how to relate to this sort of thing if they haven't gone through it.
I would appreciate any support or information any of you have that might help.
-Stacey