Hi. I had a LEEP in Jan. 2008 on my cervix (CIN 1 Cervical Dysplasia?).
I was fine in Dec. 09 but, during a checkup on my ovaries on Feb.17, 2010 (multiple rupturing cysts) the doctor found 'something' in my bladder, blood in my urine with no infection, and put me on Macrobid. My Cystoscopy on Feb. 23, 10 was awful because it felt like a fork being shoved up my urethra 13 times trying to enter the bladder. The doctor cut my urethra going in so I first bled from there. He mentioned that I have a rare 'kink' in my urethra...no wonder. Now all cystoscopies must be done in 'twilight' due to my 'rare kink. My bladder was bleeding. There were lesions and micro hemangiomas in the 'trigone area'. I am not sure what else was found...he never said. He said there was nothing 'normal' about my bladder and that it was a very 'angry' bladder...'very, very inflamed'. He told me that it is a 'rare condition' and that he saw things that he has never seen in someone of my age (late 30s)...whatever that meant. The color of my bladder was wrong; it was so red! There were blue and red veins throughout my whole bladder and he said that was abnormal as well. He asked if I ever had a bad pap. I told him that I have only had one bad pap and found I had HPV when I was younger and switched doctors. The next gyne said I didn't have HPV so I thought I didn't...(I saw him for over 12 years until he set up a laparoscopy and insisted I was 'too sensitive'--insinuating my pain wasn't real and I was a hypochondriac. Three days later, I went to my current doctor--a Urologist--who saw an ulcer on my cervix and an infection in my fallopian tubes. After an oral antibiotic, Clindamycin, and a Colposcopy with bad cells present...he performed a LEEP. So far, the bad cells are not showing in the paps...but, they never did anyway--only seen in Colposcopy; the HPV was found under layers of skin during the LEEP). Took Macrobid for another five days. He said there is HPV present in the urethra. On 3-11-10, had another urine cytology and he said he could tell me ONE thing for sure--"It is not benign" but, he said he 'could not tell if it was malignant because the cells can't make up their minds about what they want to be'. He didn't elaborate. I am confused. On 3-18-10, the secretary on the phone said I was "Negative for benign and that is good." I felt SICK!
I asked, "WHAT???? That isn't good! What does that mean? Does that mean it is malignant?" She said, "No! You don't want 'benign'...you want 'malignant'. You have 'squamous cells'." I said, "NOOOO! You want benign!!! That is 'noncancerous'!! Please!! Read the report to me exactly as it is worded!" Finally, she said, "Oh! You are negative for 'malignant'. You scared me!" I said, "I scared YOU???? You scared ME!!!" Ugh.
Okay, so they found squamous cells in the cytology when he ablated the two lesions. However, he didn't perform a biopsy...(?). I have had NO BLOOD WORK done and NO OTHER TESTS. I have a June 10th follow-up but here are my questions: How is a urinalysis and cytology in June going to show anything with my bladder, kidneys, or ureters since it took an ultrasound to find the lesions? Although, I did have blood in the urine with the first Cytology, there was no blood in the urine on the 11th and he is happy with leaving it at that. I am not. I asked if this could have spread to my kidneys and ureters (or even have STARTED there!) but he said, "You would be bleeding in your urine". Is this truly the rule? What if it is deep tissue? Also, I am having rectal pain recently. I want to have a swab to check for any cancer there as well but, in speaking with my the secretary for my Urologist, she said he told her to tell me that 'my PCP can set up a CT scan and smear if she wants to'. I had my records faxed to my PCP today but she requested for me to find out 'why my Urologist doesn't want to perform these tests'. I wish I knew...? I think he feels he found the problems: the two lesions...so, there is nothing more to do except 'check back later' in December 2010 but, I asked for June since things changed so quickly (two months)in just checking on my ovaries. Can anyone tell me what I should do, think, or ask to have done? There is terrible communication with both doctors, however, my PCP asked why my Urologist never checked my kidneys and ureters. Please help...I am terrified and feel like I am getting no straightforward answers. Thanks.