Hello. I am 41 years old. I have had stage 4 endometriosis since I was 25. I have a history of ovarian cysts as large as 10cm and have had 2 surgeries in the past with one surgery involving removal of my right ovary. After being infertile for 8 years, I did get preganant after that and had 2 children. For 8 years after, I have had no symptoms or pain. In May/June the pain/discomfort came back. Had ultrasound and had 2 cysts. One 5cm, the other one 3 cm. The small one was complex with 10 compartments and the doctor didn't like it. Had the CA125 test and came back normal. Given my history of endo, he is encouraging me to have full hysto. Although he thinks the complex cyst is probably endo, he can't be sure and can't rule out cancer. A 2nd ultrasound 7 wks later after being on birth control relayed no changes. I'm 90% sure I'm ready to to the hysto but I keep having 2nd thoughts. My main reason is to get the hysto is to get rid of the possibility of ovarian cancer now or in the future because I know that it is not easily curable. Is there any link with endometriosis and ovarian cancer?
Endo and ovarian cancer are separate conditions entirely. The doctor was more concerned with the complex cyst and cannot tell if it is a suspicious ovarian cyst or endo (different things...cysts originate on the ovary and endo originates from the uterus but can reach the ovary). Some growths start in the tubes. Imaging tests don't always differentiate one from the other very clearly. When there's doubt, take it out. It seems that's the approach most doctors take when it comes to recommending surgery or not. It's good the CA-125 was normal, although you are still too young for it to be a completely accurate test.
Has a gynecologist/oncologist seen you? They sometimes interpret results differently than a gynecologist does and have their own ideas of what surgery to recommend.
If you don't want a full hysterectomy, then can you ask your doctor to just remove the cysts and try to save everything else, including the ovary/tube, at least until you are past natural menopause? That's assuming they find benign conditions in surgery. Otherwise, removal of cysts and ovary/tube are inevitable and possible full hysterectomy as well.
Can they do it via laparoscopy? It's an easier recovery period than open surgery and shorter hospital stay. Of course, they can schedule laparoscopy and then go with something bigger like laparotomy if they see something that requires more room to operate.
Assuming you just remove the cysts now and all tests are benign, it doesn't guarantee that cysts won't form again. The question is, do you want to be done with all the surgeries now, or are you willing to possibly undergo another one in the future? You've already been through a few of these and I can easily understand your reluctance.
It's a very personal and difficult decision. I hope you are able to make the decision that is right for you and that you get the best outcome. Best wishes!
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