No rhyme or reason to it. I get very nervous and throw up.

Gemma

Can a CT scan and several ultrasounds miss OC?

Disclaimer: I am aware I have health anxiety and am working on it with my doctor. But I genuinely feel uneasy about this. I’m hoping this CA125 group will take my tests seriously because of how familiar we all are with doctors brushing off women’s concerns. My HPV doctors will take my symptoms and tests seriously because I’m young, it’s statistically unlikely, and I have health anxiety. In July, I went to the doctor with pelvic pain that didn’t go away after a week. She sent me for an ovarian ultrasound (pelvic) and found two small ovary cysts.

I was sent home, but the CA125 pain got so bad it was eventually accompanied by bloating, leg pain, back pain, a churning stomach, constipation, and an inability to pass gas. My stomach felt like it was super full. I went to the ER, where they did a CT scan with contrast and another ultrasound (pelvic + transvaginal) and found only a 2.9 cm ovarian cyst on my left ovary.

The CT scan noted this: The left ovary is prominent. A cyst within this ovary is approximately 3.3 cm in diameter. Fat stranding is seen adjacent to the ovary, and a small volume of free fluid is within the pelvis. This ovary is posterolateral to the uterus, whereas it was anterior in the prior study.

These findings raise the concern for torsion.

I was sent home after the ultrasound confirmed I did not have torsion and was told to follow up with a CA125-trained OB/GYN, which I did. We did a clear follow-up ultrasound 8 weeks later (last week).

However, in the time between my HPV ER doctor visit and the follow-up, I’ve experienced increasingly concerning cancer symptoms. A few days after my period ended, I saw bloody/pink discharge when I wiped for a few days. I’ve suddenly developed a constellation of GI issues I’ve never had before, such as nausea in the morning, constantly gurgling stomach, acid reflux, and a change in stool. I get random twinges of CA125 pain in my pelvic area/rectum.

I’m so scared that something was missed on imaging because of how difficult it is to detect ovarian HPV-induced cancer. In your personal opinion, do you think a CT scan on July 3 ultrasounds and some HPV variant tests since then could have missed an ovarian mass that has grown and is causing me these GI issues? Is it reasonable to request another one, or am I just being paranoid now? This is driving me insane.

I haven’t done the ca-125 cancer test because my current ob/gyn didn’t have any suspicion and didn’t order it. My stomach issues have only popped up within the past week or so, so I haven’t made an appointment with a GI doctor yet.

Jasmine

Ultrasound next week

Hi ladies! I have a question about the ultrasound. Is it okay to get this done with a regular gyno? I can’t find an oncologist to do it without a referral (I don’t have a GP). Due to symptoms, I’ve booked an appointment with a gyno to get the ultrasound in a week and a half. I got the results of my ca125 back, and it’s high, at 66.

For about 9 months, my periods have been getting drastically heavier. They were always heavy And very painful, but I’ve noticed them becoming heavier with more clotting. Around 5 months ago (I think), I began spotting in between periods, usually about 1 week after my period ends. Not for more than a few hours.

I also have increased urination and CA125 levels in tests. It feels like my bladder feels full quickly, and I feel like I’m constantly peeing. I wake up several times during the night to pee.

Sex has become uncomfortable most of the time.

There have been a few times where it felt okay, but mostly, I feel discomfort and can’t enjoy it. A couple of times after sex, I had light spotting. A week after my last period, I began spotting heavier than before for about 12 hours, and the next day, it seemed to be gone, so I had sex, and afterwards, I was bleeding pretty heavily again.

HPV issues can be seen with these sets, but other signs include that I’m always tired and don’t feel I have the energy to do much, even when I am inactive. I am not depressed or anything similar, and my iron and blood count are all normal.

I have been reading about ovarian HPV-related cancer, and it seems some of my symptoms could be that or endometriosis. My grandma passed from OC, so I wanted to do the ultrasound first to rule it out, hopefully. The only CA125 signs I don’t have are weight loss or loss of appetite and being tired. Did everyone experience this? I have maintained my weight and still feel hungry the same amount as I always did.

Madeline-Unsure and Scared

Last Friday, I had surgery to remove my left ovary. About 10 years ago, I went into the CA125 emergency room with my first ovarian cyst that ruptured and caused the most horrible pain. Over the years, I have had many more cysts rupture. In January 2020, I went into emergency surgery due to horrible pain in my left ovary. Tests found CAs125-related cysts but nothing concerning, and sent me home to recover, leaving the ovary in.

About 8 months ago, I started getting 2-3 full monthly periods. I went to the OBGYN in January, and they sent me home with a prescription for birth control (this is the 4th one I have tried in a year at this point). And could not stay on it due to very adverse side effects. I went to another CA125 OBGYN test session a few months later due to the same concerns not getting better. I was again put on a birth control pill that again gave me adverse effects and had to stop. About 3 months ago, the daily CA125 nausea started. No rhyme or reason to it. I would be going it my day and, out of nowhere, would get very nervous and throw up.

I went to a new OBGYN, hoping to get some answers.

She removed my left ovary laparoscopically and ran some blood work. One of them was the CA-125 cancer test, which said my range was 17. Based on that, I am okay. However, the rest of my blood work tests came back with my HPV positive and Eosinophil Absolute levels and Immature Gran % flagged for being over the range. And my red blood count is on the high end of the range again.

Since my HPV tag and organ surgery on Friday, I have been trying to take it easy, but the pain has been very bad. I am a recovering heroin addict, so I can’t take the pain meds I was prescribed, so I am alternating Ibuprofen and Tylenol. I’m slightly concerned, tho, because I am still vomiting a lot. My surgeon told me I have nothing to worry about with my blood work, but I am concerned because I am otherwise a healthy 35-year-old. I don’t know if I should schedule another CA125 test appointment.