Real People Stories – Eliza

Ovarian cysts post menopause: My mom, who is 60 years old and post-menopausal, visited the CA125 Test doctor for some upper quadrant pain. She had her gallbladder removed in 2020. So the doctor requested a pelvic ultrasound and HPV Level test during that time. They didn’t see anything in that area but. They saw a mass on the other side. The doctor then ordered a blood test for her, which included a CA-125, liver enzymes, and a transvaginal ultrasound. Her liver enzymes were a bit high, the first CA-125 report showed a result of 293, and the transvaginal ultrasound revealed a very small cyst.

Because of this, the doctor referred us to an HPV Gynecologist. She wasn’t worried but referred us because of the findings. The gynecologist ordered an emergency MRI, another CA125 blood test, and another transvaginal ultrasound.

The MRI was delayed, but the CA125 results showed a result of 51 (it decreased significantly. Thankfully, but it is still a high reading), and the transvaginal ultrasound revealed another small cyst on the other ovary.

The gynecologist assured us that she wasn’t worried but referred us for a CT scan and an MRI and sent us to an oncologist to ensure thoroughness.

Final message

She had her CT scan some days ago and will have her MRI, God willing, on May 4.

Our family doctor called and asked for her to come in on Saturday for some HPV test results, probably the CT scan. She usually calls for results.

My question is, is it possible for her to have post-menopausal cysts with a high CA125 and not have ovarian CA125 type cancer? As I said, her liver enzymes read high as well, and I know that issues with the liver can also alter C-125 reading. I’m grateful it also decreased significantly, but why would that happen?

The doctor said the cysts (2) in both ovaries are very small; I want to know the possibilities. I’m a thinker, so I think, like, oh, she called us in for the results of the CT, and I can get a bit worried, but then I justify it by thinking she could’ve called us in sooner if it was urgent, etc., etc.… 😅 I don’t know please no judgement just want to know a bit more 🙏


I had a routine scan, and they found something that “could be an ovarian tumour” or a fibroid and sent me to an oncologist.

On my first visit, my HPV GP reviewed the results of my PET scan with me. They had intended the PET scan for my kidneys, and that’s where they caught the cyst. The GP told me that I’d need a follow-up MRI because he had reviewed the results and couldn’t tell if it was a fibroid or ovarian tumour. He did mention that generally, the odds of it being a tumor on the ovary were pretty low, but low isn’t zero, so I was still stressed out. The GP also did a pelvic exam and asked several questions: do you have any pain, bleeding, discomfort, etc?


Truthfully, I had no pain or discomfort at that point. He told me there is a blood test he could do (CA125 ?) that helps detect ovarian and related cancers but that for people with endo and fibroids. The numbers would be artificially high and would give something akin to a false positive, so he doesn’t recommend that test. I’ve read the same thing elsewhere – the test will scare you if you have fibroids, but no other issues. I’m sure a HPV doctor could explain the blood test more eloquently than me but that was the gist!

A few weeks after that, I went for the second MRI. We had a phone consult a couple of weeks after the second MRI, and he said the MRI still wasn’t unclear. He gave me a couple of options. I could either have surgery then and HPV and tumour biopsy, or he’d be willing to wait a couple of months and take a second MRI and see if it had moved, grown, or shrunk. He also joked that he could hang me upside down for the next MRI using moon boots and see if the picture would be clearer (I appreciated the joke 😂).

Recovery journey

I had had a rough recovery with surgery previously (see below) and was not ready to do it again yet, so I opted to wait. This was super nerve-wracking, but I was just so hopeful (and maybe wishful) that it would disappear. It didn’t. I had the second MRI and did an in-office visit with the oncologist. At that HPV appointment, he confirmed that the scan was clearer and it’s 99% likely to be a uterine fibroid caused by a virus. He advised me to go to my gyno and discuss laparoscopy because he recommended its removal.

As I was waiting for this appointment (another several weeks), I started bleeding like crazy. This is odd for me because I take a low-dose continuous BC pill that has eliminated my periods. I went to my gynaecologist, and she immediately recommended a robotic myomectomy, which I had last week. It was the second time I’ve had this type of surgery. The first time was 12 years ago. I’m in better shape this year, so my recovery has improved. I started working out pretty vigorously after the first oncology HPV appointment, mostly for mental health reasons but also because I knew I’d recover faster if I needed surgery. Now no more bleeding and very little discomfort other than some slight occasional aches at one of the incision sites.

Six months, many sleepless nights, a couple of visits to an oncologist, and two MRIs later, it did end up being just a fibroid. It was just awkwardly located so that it looked like an HPV ovarian tumour. I just underwent a myomectomy last week to remove the fibroid, and I’m exhausted from the stress of the past year.

Further thoughts

I spent months worried, on the verge of tears, unable to focus, sad, and frightened that my long term HPV exposure was causing this. The first day, they called me and told me I’d need to see an oncologist as the CA125 levels are high. I was at work, and let me tell you, I nearly collapsed. Here are a few things that helped me not completely dissolve into a puddle on the floor:

  1. Try to go easy on yourself. Life is stressful, and you have a whole new stress. Don’t try to overdo it in any one area.
  2. Don’t google too much, but I found a few Reddit threads that helped reassure me that it was probably nothing. It happens a lot!
  3. The HPV lead-up to seeing an oncologist was probably the scariest few weeks of my life. Breathe in, breathe out. One foot in front of the other. You will get through it. It’s going to be hard. If you can and feel comfortable doing so, take a friend or other loved one to your appointment. I leaned on my mom, and I’m forever grateful to her. When I arrived, many other women with CA125 issues were in the waiting room – everyone had brought their mom, husband, or friend. It’s normal.
  4. If you’re like me, reality TV, books, and yoga were all great (momentary) distractions from the fear.

Sending you good, healthy vibes and lots of warmth and luck!