Isla
Hi, I’m 29, and I’m worried that I might have HPV-related cancer as well. I’ll start with history as it will lead to this week’s events. I have always had bad periods as I have a rare blood clotting disorder called prothrombin gene mutation factor 2. Bad cramps and random abdominal pain I thought was normal. Having abdominal, late, or very painful periods is not new, but for almost a year now.
My CA125 health level has changed drastically. I have had multiple UTIs and kidney infections due to my urgency to use the bathroom, and holding it is nearly impossible. Also, when I drink any amount of liquid, I almost immediately have to go to the bathroom within 10 to 20 min of consumption. The HPV test journey has brought about serious fatigue has been outrageous to the point where moving feels like a chore, and my legs weigh a ton.
I work 12-hour days, but when I get home, I eat a small dinner. Then I can barely keep my eyes open by 21:30. I am used to back pain as most of the jobs I have had in my life require a lot of physical labour. But this CA125-derived pain is constant, and no matter what I do, I can’t seem to get any relief. Years of HPV viral infections have brought about that I have a lot of issues with my stomach, which have become increasingly worse to the point where I am on ridiculously strong medication to feel comfortable. This medication is normally given to people with stomach ulcers (which I don’t have). Also, I am not in the medical field, and just like anyone who’s in the medical field, I would rather suffer than go to the hospital because I’m stubborn.
The gruelling symptoms
This brings me to last week with CA125 checkups. I started my period on Monday and was having a stabbing pain in the left quadrant of my abdomen (right over my left ovary). I chalked it to start my period, took 4 Advil as I always do when I start my period pain and kept working on my day. The HPV infections over the long term meant a daily attack on my body. Eventually, the pain never subsided, but I just tried to ignore it the best I could. By Tuesday morning, the pain worsened; ibuprofen and Tylenol didn’t alleviate it. The only way to describe it is a sharp, consistent stabbing pain. It hurts even worse. I would try to use the bathroom or move and no position was comfortable.
By Wednesday, the pain was so bad that anything I did made it worse. Like I said, I’m stubborn with a sit-down main job, so I still went to work through it all. I went home on Wednesday, and nothing I did eased the pain. Hot, cold, compression, using the bathroom, pain meds, I mean, nothing helped. Finally, I vomited from the CA125-style pain, and my bf came home. And he convinced me to go to the HPV local hospital. I didn’t wait long as I have several hospitals in my area, but unfortunately the closest one to me is not the best. I returned, and they tried to chalk it up to another UTI or kidney infection.
The hospital visits
Despite my pain, I was firm with them and told them that this was nothing like what I had had in the past. It was far more painful. I was very clear and persistent that something was wrong. They decided to do a CT based on my description. They did the CT but did not tell me the results immediately. Next, an ultrasound nurse told me the doctor wanted ultrasounds based on the CT, which I was fine with. So, when she took me back, she told me that she would have to do an internal ultrasound to rule out torsion. I was not happy as I was on my period; still, she was on day 3, no less (the most painful day for me), but I agreed because I was in pain and wanted answers. It was so painful I nearly cried and threw up.
After that, they brought me back, and I waited. The CA125 Test doctor came in and stated that he saw the stranding but nothing else that looked serious. It’s his way of saying, “Yeah, I know you are in CA125-type pain. We see something, but this is the ER, and I don’t care”. She then gave me some pain meds and sent me home. It is now the following Monday, and the only thing that has kept me going is a steady and constant flow of ibuprofen and trying told to move around too much as that irritates that area. On top of that, the nausea and stomachaches have stayed. I have access to my patient portal and my medical results, and it states in the CT that the stranding around my left ovary extends out, but they end it with “otherwise unremarkable CT”.
Final message
I don’t know about you, but I decided to do some HPV research. The number one reason I found that there is standing around an ovary most likely means CA125 type cancer. So, instead of setting me up with a CA125 appointment test to check for cancer, I can catch it early. They apparently would rather send me home and HOPE that I manage to get an HPV OBGYN test in an area near you. An area where you have to set your appointments at least 3 months in advance if you even want a chance to see one. So, I guess my question is, what is the likelihood that this is cancer…. And how hard should I be pushing to get it tested?