5 Racquetball Size Endometriomas

[Brookerock]

hey friends!

I know majority of you are in the UK, however, I am in the US and am struggling to find a community like this one.

I was diagnosed with PCOS about 6 years ago, and have had complex cysts pop up 3 seperate times - 1 of which grew to the size of a cantaloupe.

I had the cantaloupe mucinous cyst removed 2 months ago, and they “preserved my ovary”. I had some complications with that surgery that resulted in me hemorrhaging and having to get 2 blood transfusions.

Well I noticed a bump in my pelvis a couple of weeks ago, and had an ultrasound a few days later. We were able to distinguish a large cyst on my left side ovary (the one that has had reoccurring cysts over the last 6 years), and we saw what we thought was old blood from the hemorrhaging in my right side on the ultrasound.

We made a plan to do an abdominal wash to clear the blood, and to remove the cyst, along with the ovary.

Jump to my surgery this Wednesday and my surgeon (a different surgeon that the one I had 2 months ago) found some crazy things. My left ovary was the size of an American football, and inside of it I had 5 racquetball sized endometriomas. He had to drain the fluid in multiple spots to even remove the mess through my incision. He had no choice but to remove the ovary because it was destroyed 🥴

He has NO idea how my body would have produced all of this in 8 weeks. He is looking into what my other surgeon did 8 weeks ago, to see if he saw anything, or even searched my abdominal cavity for more cysts.

With all of this, I am now a bit on edge. I’ve read that endometriomas are a sign of advanced endometriosis, which I have never been diagnosed with before. And I am also very worried that the pathology is going to come back with them being cancerous considering the size and quantity of the cysts. The results of this surgery are so suspicious and scary.

My questions are, does this officially mean I have endometriosis? have any of you had an experience like this, or had multiple endometriomas? If so, did they grow on your other ovary as well? Did they come back cancerous? Ahhhh. I’m for sure feeling a bit frazzled.

[Avourneen]

Hi Brookerock,

That all sounds very complicated. PCOS is as I understand the kind of oppposite illness to endometriosis. Caused by too much testosterone rather than too much oestrogen. So I am suprised to see the two things diagnosed together but I have seen a few people on here saying they have the same tow condiditions so it must be possible.

Large endometriosis are a sign of advanced disease but it doesn't sound as if everything is stuck together in sever disease it's normal to find that the bowel is stuck to the ovaries or uterus etc and that internal organs are attached and can't move properly. THis hasn't been mentioned which is a good sign.

I think if an experienced surgeon has operated on you they would know if the cysyts etc were cancer. I would be suprised if a good surgeon didn't recognise cancer so try not to get too scared about that.

The good news is if you live in the US many of the worlds best endo doctors are near you. Here it's hard to find very good specialists and they are often booked up. Did you have scans before the operation was performed? there are several top endo surgeons in the US who will look at your scans and advise you what to do are free of charge.Obviously they charge a lot for surgery but in the UK a consultation with a top surgeon is £300.

I don't know here you a re based but a doctor from Texas who is meant to be briliant gave me some really good advice.He talked to me for an hour and went through my options and if there was no covid I would fly there and have surgery with him.

Perhaps the first doctor missed some of the cysts ? It does happen. also some people's endo just grows back really fast. But your doctor only seems to be focusing on cysts, normally in advanced endo the reports talk a lot more about internal organs being pulled out of shape or stuck together and endometrial nodules. Perhaps you should find a more specialist doctor ?

Also if your doctor thinks cancer is a possibilty they should do blood tests, that can help clarify whether cancer is the isue or endo but as I say I don't think an experienced surgeon would operate and see cancer and not recognise it.

I hope you get the situation clarified , let me know how you get on and try not to catastrophise or let your fears run away with you. I know that 's easier said than done. But try.......good luck.