Hello - this is my first post. I’m sorry it’s long.
I had one abnormal pap and colposcopy back in 1992, in my early 20s, but they did not find anything on the biopsy. For the next 30 years I had completely NORMAL PAPs, until this year when it showed abnormal and apparently HPV positive, which in itself freaks me out because I’ve been with my husband for 20 years and have not cheated - though my doctor said this could have been dormant for years and recurred due to a very stressful situation I’ve been dealing with, so not to jump to conclusions on where it came from. The PAP test shows ASC-H as the result, and my doctor insists I undergo another colposcopy rather than retesting in 6 months. Recently insurance decided not to pay for annual PAPs for “low risk” patients, which I now realize may have led to the delay in catching this problem. 30 years ago I tolerated colposcopy okay, although it was painful, but I was a lot healthier back then and now that I have fibromyalgia and several painful medical experiences, I am terrified, honestly. I think I can get through the colposcopy, but it’s what lies beyond that scares me. In my area, doctors do not often let you have anesthesia for LEEP (or many other painful procedures) and my insurance definitely won’t cover any anesthesia for something they deem “minor.” I just cannot do invasive procedures with any level of consciousness, nor can I afford the thousands extra for anesthesia, so I just hope the colposcopy biopsy is negative and I can just monitor yearly.
I know it seems like I’m a wimp, and I probably shouldn’t worry about the possibility of future procedures until I know the results, but I do not want cancer. I underwent knee replacements and did just fine with the recovery, but I would NOT have wanted to be conscious during the surgeries. I had a heart cath and the anesthesia didn’t work, although it did reduce the pain, and I talked through the whole thing and remember it very well, and I had one other instance where I was supposed to be in twilight sleep and I felt everything - so that adds to my anxiety. Doctors and nurses brush off my concerns when I mention awareness during procedures. I can tolerate most pain that comes with my health issues, but I just cannot tolerate someone inflicting pain on me, if that makes sense. I am afraid I’ll react with some defensive reflex (like kicking) if they force me to do it that way, not to mention the pure anxiety of being awake and aware and not to mention the pain as it happens.
I have had gynecological issues all my life and started on the pill for heavy, weeks long clotting periods in my 20s which kept things under control until about a year ago, when clotting started again. I never planned to have kids, so I didn’t object to using the pills as a treatment. (I was denied sterilization even in my late 30s due to doctor concerns that I would “change my mind someday.” I never changed my mind.) At age 53 I am still taking the pills to regulate periods, but of course my body’s trying to start menopause so that will probably end soon. I feel like there is a war going on in my body, especially factoring in the fibromyalgia which is flaring due to the added stress and lack of sleep.
I know I have at least 3 fibroids, based on imaging several years ago, but no medical provider took them or my discomfort seriously, so I just lived with it. I’ve never been one to stand up for myself with doctors, and that HAS to change with this situation. Now that there is a possibility that I will have cancer if something isn’t done, I just want to go forward with a hysterectomy. Every other woman in my family had them, one at age 27, and others in their 40s, all claiming their life and painful symptoms improved greatly afterwards. I have never seen the provider that will do the colposcopy, so I sincerely doubt they’re going to offer me a hysterectomy until things get much worse unless actual cancer is confirmed. My primary care doctor did agree that hysterectomy might be a good option given my other issues so at least she’s in my corner on that. I know that it is a major surgery and carries risk, but if it reduces my risk of cancer and relieves my misery, I’m ready to do it - as long as they don’t make me stay awake!!
Additionally I have an issue with cost, since I’m in the US. I have to pay $9500 each year before my insurance pays a dime, so I don’t want to waste money (or time off work) on all of these preliminary efforts to remove the cells and end up having a hysterectomy in a year or two anyway.
I apologize for the length of the post but I am happy to be among people who can actually understand what I’m going through. I don’t really have anyone here I feel I can talk to, including family, who have their own problems, and I’m reluctant to burden my best friend just yet.
