Endometrioma

Hello ladies,

I'm on an emotional rollercoaster right now and hope someone can give me some info or their own experience. My surgery went pretty well, had a few issues with fever, heart rate in the hospital but all in all, it was successful. My pathology came back with Atypia cells so it was sent to an oncologist who recommended it be sent to the leading pathologist in the US (a woman in Washington). So it came back as Atypia cells, endometrioma on the removed right ovary and now I have been referred to a cancer specialist who deals solely with gyn cancer types. I've had this explained to me so many times my head is spinning. I'm told right now, I don't have cancer....so my question is if I don't have cancer, why the gyn cancer specialist? I will most likely have to have another (WOULD BE MY THIRD IN LESS THAN 6 MONTHS) surgery to remove this ovary and I don't know what else....my appointment is on July 8th.

Does anyone have a similar experience or and thoughts? I appreciate anything anyone can give.

Thanks so much! I'll put this on post-op as well.

Donna

I looked on the Internet for endometrioma and wound up confused myself. I found a couple of MRI images/photos and more on endometriosis. I'm afraid I can't be of much help. That you are being sent to a gyn/onc is a good safety measure--IF anything odd turns up, this is the specialist you want. I know you're sick of surgery--hopefully this will be the last. Ask tons of questions at your appointment. Sorry I couldn't be helpful.

DONNA,HI
I CAN'T BE OF MUCH HELP EITHER BUT I AM SURE SOME LADY OUT THERE WILL BE HERE SOON TO ANSWER YOUR QUESTION.
MAYBE IT'S NOT CANCER YET BUT COULD TURN INTO IT.
DID YOU ASK YOUR DOCTOR WHAT IT MEANS?? I AM SURE HE WOULD BE THE ONE WITH THE HONEST TO GOD, CORRECT ANSWER. GET A HOLD OF THE DOCTOR AND ASK. S
FOR NOW DON'T BE TOO SHOOK UP, IF THEY SAID IT'S NOT C. THAN DON'T WORRY, BUT DO CALL YOUR DOCTOR.

s Donna

Like Margaret, I did a search on google. It really doesn't say much for endometrioma. Some sort of cyst. However, it sure sounds like you are in good hands. A second pathologist reading, and a referral to a gyn cancer specialist. The gyn cancer specialist is the best one to recommend the appropriate treatment for sure. I know waiting is just the hardest part. Especially when you might be hearing the need for another surgery.
Hopefully not. Let us know how you make out.

karenann

Girls,

An endometrioma, according to the Merck Manual, is a BENIGN tumor - it's basically when the endometriosis gets beyond it's own boundaries and forms a "cyst-like" tumor.

Hope this helps - always ask your doctor to explain though, until you understand fully what he's talking about

Tess

Donna,

I had Endometriomas. My endocronologist explained them as "big clumps of endometriosis". Sounds pretty yucky!!

Kristi

An endometrioma is a cyst, usually benign, that is filled with stuff sort of like very viscous motor oil (nice visual, I know...I'm real glad mine didn't rupture!). They can grow fairly large (mine was over 5 inches in diameter all the way around ). Another name for them is "chocolate cysts" although searching in the non-medical literature won't help much.

Generally, the reason for a GYN oncologist has to do with the surgery, not the actual type of cells. On the pre-op forum, this issue frequently comes up.

The thing is, the GYN oncologists are covered and trained to do much bigger surgeries than their OB-GYN counterparts. For example, my regular GYN surgeon could do my hysterectomy, but if endometriosis were found on my bowel, he would not have the training nor the privileges at the hospital to do that procedure. Since endometriomas can be stuck to anything and everything with adhesions or more endo, this can turn into a much more complex surgery.

So, although your endometrioma is benign , in many communities, a GYN oncologist would be able to do the complex and possibly extensive surgery that removing it may entail.

Hope this doesn't come along too late to help ease your mind. This is exactly the scenario I dealt with on my surgery (with an elevated CA-125 and complex cyst to boot). And it came out OK.

One recommendation I would make to any woman with endo: research your hormone options very carefully. You do NOT (hopefully) want this to return, and some surgeons will put all their patients (especially the young ones) on estrogen replacement early. Some women seem to do OK with that; others of us have, either through research or hard experience, chosen NOT to replace our estrogen for some period of time in order to ensure that this indeed is the final surgery.

Donna, good luck. I can't imagine going through surgery of this magnitude 3 times in 6 months.

Audrey