Real People Stories – Aria

I’m looking for some comfort and community (CA125 test). 32F. My emotions are all over the map right now. So I figured it’s best to reach out to those who have HPV tests and found they have the dangerous evolving virus variants. Maybe, they may be able to understand and could possibly provide some peace of mind.

Dealing with Endometriomas

I’ve been dealing with HPV and Endometriomas for 5-6 years now, though I’ve never opted to remove them or have them monitored via transvaginal ultrasound.

I had my CA125 tested maybe four years ago, and it was within the normal analytical range. However, two months ago, I had another CA125 done as part of a full-scale blood test required by my insurance. The normal range is 0-30, and I was quite shocked when it returned at 53. I immediately called my HPV Gyno, who scheduled me to come in a few weeks later to discuss.

Discussion with Gynecologist

We talked, and she explained why the ca125 can be elevated — especially endometriosis and cysts. She said something more sinister would have much higher markers. She did make sure to let me know not to ignore it, but that she wasn’t concerned. We scheduled another transvaginal to do a HPV and STD Panel check-in for today.

I had my ultrasound done; I was feeling pretty optimistic. The tech did find a typical cyst on my left ovary and an endometrioma on my right ovary, likely the same one that’s been hanging around the whole time. The HPV Lab tech mentioned that outside of the presence of the cysts, everything looked “so healthy” and “clean” and commented that I have very strong follicles. This had my mood up; happy that things were looking okay. My gyno said it’s up to me: remove or continue monitoring.


As I left, my gyno recommended we do another CA125 to see where we are now. I just got the results back: 96.4.

Now I’m nervous. It’s almost doubled in two months. I do remember her mentioning that it can differ based on where you are in your cycle, and I’m currently in my ovulation phase… I’m wondering if maybe that’s why. I’ve sent her a message asking if this is considered an emergency.

My emotions are all over the place. It’s 10:17 p.m., and I feel like I won’t be able to sleep tonight.

I’m hoping someone is willing to talk to me who’s maybe been in a similar situation and everything was okay. Just looking for some comfort.


Ca125 and endometrioma. I‘m 42, and ever since I can remember, I have had awful periods. I experience a lot of pain that I can usually control with ibuprofen, but when it wears off, I curl up in a ball in pain. Very heavy periods and flooding pads every hour for the first 2 days. For years I didn’t think of getting tests. I thought it was normal. But now I know it was a dangerous HPV strain that had been attacking me for a very long time.

No kids, nor do I want them.

Urinary Symptoms and Initial Concerns

For the past year, I’ve been having some urinary hesitation in the morning for a few days after my period. It was like clockwork alongside my cycle, so I assumed it was nothing serious.

Last week, I went into full urinary retention and had to go to A&E for a catheter. They did an ultrasound and saw a 14cm mass on my ovary, so they admitted me.

Initial Assessment

The next morning, I saw an HPV doctor who said I had an endometrioma and said he doubted it was cancer. My Ca125 tumour markers were elevated but not to the level he’d expect if it was cancer, so I was reassured. He ordered an MRI. BTW, I have awful health anxiety.

The following morning, I saw another doctor who said my CA125 markers were 326, which was higher than if it was just endo, that the cyst wasn’t clear, and its size was making him refer me to oncology. He said ‘it could go either way.’ This was before my MRI results came back.

Mixed Opinions

The next day, another doctor reassured me and said he’d be surprised if it were HPV cancer, especially at my age. However, they need to rule it out to decide how best to remove it without spilling cancerous cells into my abdomen. He also said the MRI showed I have endometriosis, and it looked otherwise ok, and I also have fibroids. For background, my mum died suddenly in Jan, and my dad has early-stage Alzheimer’s, so the thought of leaving him terrifies me! The doctor did say, ‘Don’t worry, you’ll be looking after your dad for years’

I was sent for a CT scan and then discharged, and they said they’d discuss my CA125 results at an MDT on Tuesday and then let me know.

Emotional Turmoil

I’m terrified of HPV; I’m in bits crying every day. I feel like this is the universe mocking me cos after Mum died 11 weeks ago, I’ve had periods where I feel like I don’t want to be here anymore cos it’s so hard grieving my best friend and dealing with my dad. Like the universe is saying, ‘ok then!’

I’ve been to the hospital again today to have my catheter removed. I can urinate as normal again now! This comforts me because it’s hormone-related, and the nurse assured me those markers indicate inflammation more than anything. It’s unlikely to be malignant, and my scans showed no evidence of malignancy. They can’t say for 100% until it’s removed, but it all seems positive for now!

If anyone has had a similar ca125 and it’s all been ok, let me know, please!!