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I went to the ER approx 9 days ago with severe abdominal pain, thinking maybe it was a kidney stone. Long story short, they gave me meds for pain and nausea and sent me for a CT scan. The CT results were that there were no stones, but instead a large complex mass on my left ovary, both solid and cystic in nature. Back story, I had a hysterectomy 18 years prior due to heavy, prolonged bleeding (final pathology diagnosis was adenomyosis) but chose to leave my ovaries intact because I was only 41.
I saw a GYN in consult during my ER visit, and she suggested removal of the mass, but additionally she could not offer to do the surgery because it is a tiny hospital with no pathology dept. She suggested I try a larger/regional hospital for the procedure.
Fast forward five days and I found myself in a larger hospital system’s ER again due to severe pain. They did a number of tests and performed a pelvic ultrasound. This confirmed the complex mass (which they said was quite large 8 cm x 11 cm) and if I recall correctly, was even larger than what the CT scan had shown just days before. They said it was non-emergent to remove, but provided me a referral to ob/gyn. They also drew a CA125 blood test, which resulted in a reading of 7.
So on Friday, March 22nd I had an appt with the GYN specialist. He seemed extremely non concerned and really, completely nonchalant about all of it. Everything I’ve read suggests removal and biopsy (especially due to my age, I am 59) but when I asked him about removing it, he shrugged and said maybe, maybe not - and he wants an MRI first. In addition to the 2 imaging tests I’ve already had. He also won’t tell me why he feels an MRI is necessary. He also drew a CA125.
I called to try and schedule an MRI but the 1st appt within the system is 4-5 weeks out. Then he said I’d have to wait an additional 1 week to get the results of the MRI.
In the meanwhile, my CA125 has come back from HIS office and while it was previously 7, now it’s 34!! Which has me pretty freaked out, considering only a few days between the tests. I don’t think the GYN realized they had done the test in the ER as well, otherwise he probably wouldn’t have ordered it? It just seems like a huge leap.
The indecisiveness and anticipation are really getting to me. Just wondering if anyone has a similar experience to share or are there any medical professionals who would like to chime in? Thanks.
I’m in western NC/upstate SC. I didn’t know that I could specifically request a GYN oncology referral until I had an official diagnosis of cancer?
There is no way to know whether you have cancer until the mass is removed. The best person to do the surgery is a gyn oncologist, even if it turns out to be benign, because he will know what needs to be done if it is cancer.
You should ask your insurance company for a list of those covered by your plan.
Find another ob/gyn who is not so flippant. And advocate for yourself. If they are suggesting anything but removing it, tell them to note that, in writing, in your chart. Be the squeeky wheel.
There is no medical reason to not remove the ovary. Even if they were 100% positive that it was not malignant, which they're not, it's still causing you pain severe enough to go to the ER more than once. Sadly, a large part of the medical community still thinks pain that severe due to the female reproductive system is normal and acceptible and that women just need to live with it. None of that is OK.
I went to the ER approx 9 days ago with severe abdominal pain, thinking maybe it was a kidney stone. Long story short, they gave me meds for pain and nausea and sent me for a CT scan. The CT results were that there were no stones, but instead a large complex mass on my left ovary, both solid and cystic in nature. Back story, I had a hysterectomy 18 years prior due to heavy, prolonged bleeding (final pathology diagnosis was adenomyosis) but chose to leave my ovaries intact because I was only 41.
I saw a GYN in consult during my ER visit, and she suggested removal of the mass, but additionally she could not offer to do the surgery because it is a tiny hospital with no pathology dept. She suggested I try a larger/regional hospital for the procedure.
Fast forward five days and I found myself in a larger hospital system’s ER again due to severe pain. They did a number of tests and performed a pelvic ultrasound. This confirmed the complex mass (which they said was quite large 8 cm x 11 cm) and if I recall correctly, was even larger than what the CT scan had shown just days before. They said it was non-emergent to remove, but provided me a referral to ob/gyn. They also drew a CA125 blood test, which resulted in a reading of 7.
So on Friday, March 22nd I had an appt with the GYN specialist. He seemed extremely non concerned and really, completely nonchalant about all of it. Everything I’ve read suggests removal and biopsy (especially due to my age, I am 59) but when I asked him about removing it, he shrugged and said maybe, maybe not - and he wants an MRI first. In addition to the 2 imaging tests I’ve already had. He also won’t tell me why he feels an MRI is necessary. He also drew a CA125.
I called to try and schedule an MRI but the 1st appt within the system is 4-5 weeks out. Then he said I’d have to wait an additional 1 week to get the results of the MRI.
In the meanwhile, my CA125 has come back from HIS office and while it was previously 7, now it’s 34!! Which has me pretty freaked out, considering only a few days between the tests. I don’t think the GYN realized they had done the test in the ER as well, otherwise he probably wouldn’t have ordered it? It just seems like a huge leap.
The indecisiveness and anticipation are really getting to me. Just wondering if anyone has a similar experience to share or are there any medical professionals who would like to chime in? Thanks.
Yes, I’ve had a similar experience. Same sized mass almost exactly. My CA125 was in the 200s though. Then went down. Then up again.
It was an endometrioma. I wonder if yours might be too since you had adenomyosis. Most are on the left side.
Your tumor marker increasing is concerning. I would see a gyno oncologist and/or endometriosis specialist. Request an MRI and hope that you get a competent radiologist.
Yes, I’ve had a similar experience. Same sized mass almost exactly. My CA125 was in the 200s though. Then went down. Then up again.
It was an endometrioma. I wonder if yours might be too since you had adenomyosis. Most are on the left side.
Your tumor marker increasing is concerning. I would see a gyno oncologist and/or endometriosis specialist. Request an MRI and hope that you get a competent radiologist.
Thank you! I’m scheduled with GYN oncology next week. Already had MRI. I have a long history of endo, so I’m leaning toward the same conclusion.
Oh! Well if you already had endo, I would guess and hope that is almost certainly the reason. Especially if you had ablation surgery vs excision which is what everyone has because it’s the only thing insurance covers but it’s really not the best and can grow back. Good luck!!
Ps- my “biggest problem” was having an older male radiologist keep writing “heamoragic cyst” after ultra sounds and an MRI. It almost cost me my ovaries so please push for diagnostic clarification from the scan. A lot of radiologists don’t know what they look like.
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