Does your Family History have Ovaries riddled full of Disease?

Real People Stories-Bella

I have a large multilocular ovarian cyst and found out I have high CA125 levels after some tests. How serious is it? I am female, white, 39 years old, 5 feet tall, 100 pounds, American. I’ve never smoked or drank. I take Fluoxetine 20 mg for anxiety and Zyrtec 10 mg for allergies. No family history of HPV tests for reproductive cancer aside from my paternal grandmother, who had breast cancer. Diagnosed with IBS-C at around 10 years old and seasonal allergies.

I’ve always had trouble with my periods, even when they first began at 14. I’ve been struggling with doctors about it since 16 or 17. Longer cycle at around 35 days, spotting during ovulation, heavy bleeding and clotting, severe cramps and severe PMS.

IBS worsens during bleeding and ovulation. HPV Doctors have always told me this sort of thing was normal and said I couldn’t have endometriosis because my periods were fairly regular and my testosterone and estrogen levels were normal. Took combination birth control until my late 20s when I developed migraines from it.

Early last year, my cycle changed to 28 days on the dot and stayed that way. I also had increased ovulation spotting and had developed a weird new pain that I can best describe as sharp tugging in my lower pelvis. When I walked, it was like a ton of little strings yanking on everything. The doctor did two abdominal ultrasounds a few weeks apart that found a large complex cyst and a uterine polyp, as well as a CA125 test:

INDICATION:

Endometrial polyp(s) Ovarian mass

Diagnoses N83.8: Other noninflammatory disorders of ovary, fallopian tube and broad ligament N84.0: Endometrial polyp(s) Procedures 76856: Ultrasound, pelvic Non-OB real-time complete Transabdominal

Endometrium: to be suspicious for an endometrial polyp. Endometrial thickness, total 7.0 mm. Cervix details: unremarkable. Polyp(s) Size 12 mm x 6 mm x 10 mm. Mean 9.3 mm

RIGHT OVARY: Cyst(s) Size 17 mm x 15 mm x 15 mm. Mean 15.6 mm. Vol 1.962 cm³. Simple

LET OVARY: Findings: multilocular cyst. Size 63.2 mm x 45.3 mm x 54.3 mm. Mean 54.3 mm. Vol 81.398 cm³. The Left Ovary contains a cystic mass measuring 63x45x54 mm, which appears larger than on previous imaging.

CA125: 149

The doctor hasn’t recommended any further imaging but has recommended the ovary and cyst be removed and sent me straight to a gynaecological oncologist. I have an appointment on January 18th, which seems like years away. I have to admit I’m pretty terrified fully. My doctor is out of town for the holidays. You can’t diagnose anything over the internet but I’d love any input about how serious this may be, please. I know a high level can also indicate other conditions like endometriosis. Thank you!

Sadie

My CA-125 tests and other blood exams are all over the place. Hi everyone, first time poster here. I’m having a horrible time with my health and have been told I might have everything from endometriosis to OC to interstitial cystitis to cysts. I’m at a loss, and I cannot speak to my doctor for about three weeks as they don’t think it’s urgent.

I’ve just had a bunch of results come through; everything from my iron to my thyroid is “borderline”, including my CA125 blood results, which came up as 17 (I think 0-35 is normal, but for some reason, the doctor has noted that they can’t rule out ovarian cancer so may need to reassess if my symptoms continue). My liver function is borderline and some exams to do with my bones are borderline. I’m just exhausted and freaked out.

Do I need to be worrying?

I know it can be high for a few reasons, but my biggest question is- is mine even high if it’s not over 35? I also had a clear pelvic ultrasound a few months ago, which showed no cysts or fibroids or anything at all. My ovaries aren’t enlarged, but I do have symptoms like chronic pelvic pain that’s right-side dominant, awfully painful periods, lower back pain, and urinary symptoms that come and go. I never have a UTI, according to lab screenings. The doctor told me they wanted to use it to totally clear off any suspicion of ovarian tumours, but should I be worried?

Most doctors I’ve seen agreed I probably have endometriosis, and I’m on a very long waiting list to see specialists. The HPV doctor who ordered my most recent blood exam believes I might have interstitial cystitis and IBS (the IBS I was aware of) and not endometriosis. I’ve been referred for an ultrasound of my kidneys, too.

I’m just so afraid it’s cancer, and I can’t understand why they won’t speak to me about the results for nearly a month. Reassurance or experiences would be appreciated; I feel like I’m going insane.

Naomi

I recently got a quality DNA report with a CA125 HPV Diagnosis test kit and also some exploratory examinations and they found a couple of Endometriomas on my right ovary. I got an MRI with contrast, and one of them was enhanced (took up contrast dye) MRI report said that 2 looked most likely endometrioma. The one lit up by the dye said it was “non-specific and malignancy within the differential” Everything else looked good on me. No masses anywhere, no suspicious lymph nodes, etc. My gyno said it’s most likely a benign endometrioma. She is having a gynaecologist look at the MRI, and I had my levels checked. Still waiting to hear from them about the lab results and what the oncologist said. She said the level can be high because of endometriosis/endometrioma.

Also, I’m on my period and read that it can be elevated from that, too. I’m extremely worried, scared, and fearful while waiting for HPV lab work results. I’m 38 years old; I have one child. Has anyone had a similar experience? I’ve been having panic attacks every day. I cannot sleep, and I’m terrified because I don’t want to die. I need to be here for my son. He’s 7.

I can’t believe this is happening.

I’m so scared that it’s ovarian CA125 cancer. If it is, I hope I caught it early. We will have it removed but have to wait for the HPV variant doctor and lab tests to come back. The waiting is the absolute worst. Thanks for letting me vent. It’s been a rollercoaster of emotions. Does anyone with similar experience want to tell me their story? I’m trying not to research a bunch of stuff. But seeing the word “malignancy” made me stop breathing for a few seconds. Ovarian disease does not run in my family. Hoping for the best outcome I can get.