I went to gyn oncologist and he said on exam the cyst did not feel "scary". It does have some solid and some fluid filled areas. My CA-125 was 38. He does not believe that I have endometriosis because when I had my pelvic reconstructive surgery, I had no endo and after that my tubes became 100% blocked. I go back for a blood-flow ultrasound (I think that's what he called it) on 8/21. He said if I have to have surgery (and it isn't malignant which he doesn't think it is), he will only remove the one ovary and tube. I'm glad to not have to have a complete hysterectomy. I am a little worried about the CA-125 though. I was hoping for a lower number. How does this plan sound? Thank you so much.
Dear Kasee,
To summarize, you have a large cyst on your ovary. i am guessing but if it is bigger than a naval orange, it must be at least 10 cm in size.
You have Crohn's disease.
You do not have any symptoms from this cyst.
You are right, endometriosis cannot be diagnosed without surgery and a biopsy. We ( the medical profession do assume certain findings correlate with endometriosis - bad menstrual cramps, certain types of ovarian cysts, etc. But the ultimate answer is found at surgery.
so the question is, if you are completely without symptoms, why do you need surgery?
So perhaps, we should turn this question around and ask : what are the possible explanations for this larger cyst?
How can we get more information about this?
Cysts that do not go away with the menstrual cycle are not cysts of ovulation. So your cyst has been there for several months and we can rule out a functional (physiologic) ovarian cyst as a possibility.
The cyst can be a collection of fluid in scar tissue near your ovary and tube secondary to your IBS.
The cyst could be a benign tumor, a fluid collection inside your fallopian tube, or endometrioma.
The cyst could be a malignant tumor
The actual properties of the cyst seen on ultrasound can help answer this : solid, cystic, increased blood flow, internal complexity to the cyst etc
An MRI can help distinguish blood from solid growths and is our best tool to diagnoses endometrioma.
A CA 125 may be helpful. it is elevated in fibroids, endometriomas, and malignant tumors.
Ultimately a stable asymptomatic cyst that is not growing can be watched for a while. Sometimes large benign cysts can twist or rupture and cause pain and that may be a reason to remove them
best wishes to you