I’m new and looking for advise - 14cm and 8cm bilateral ovarian endometrioma cysts

[mjawb4]

Hi everyone, I’m new here! I am 24 years old and recently being undergoing tests where they have found rather large cysts.

It started back in early 2021 where I was experiencing extremely painful sex which was debilitating me, leaving me curled up for hours in excruciating pain. After going to my GP, being examined and swabs taken they just said it was in my head and to try some therapy. They were not concerned about my irregular periods, where my cycles were lasting 35-47 days and mentioned if I wanted regular periods to go back on birth control. I left feeling disheartened, questioning why I should be on birth control to be “normal”. I just ended up living with it, until July this year where my stomach was noticeably getting larger. I went back to the doctors where swabs and bloods were taken and she examined my stomach which was rock solid. My CA125 marker in my bloods was raised, which led to an ultrasound back in August where they found 2 cysts, one at 13cm and one a 7cm, suspecting endometriosis and on the 2 week pathway to rule out cancer.

After being referred to a gynaecologist they wanted to do their own ultrasound and MRI. This was about a month after the original ultrasound and the cysts had grown to 14cm and 8cm within this time as I’d had another period, and they were unable to even see my ovaries!

I was then in for an MRI 2 weeks later where they believe the cysts to be bilateral ovarian endometrioma and nothing malignancy although the large one looks complex.

I am now waiting my next appointment in a weeks time to discuss the MRI in more detail with next steps and management of the cysts. We have touched on a laparoscopy and my doctor has mentioned with them being so large it might not be possible and a full incision might have to be made, although I’m trying not to stress over that until we know more! I just want these out ASAP as looking 20 weeks pregnant is getting very uncomfortable haha!

Any advice you have would be greatly appreciated! What questions I should be asking, should I be discussing potential egg retrieval which the cysts being this large, what I should expect for the next steps, if anyone has had a laparoscopy with cysts this big.

Thanks so much in advance!

[Jade2006]

Hi I’m so sorry you are having to go through this I had a large cyst 13 by 10 .

Mine was on the cancer pathway , luckily it wasn’t but it has taken away my ovary.

I had a laparotomy as they couldn’t do keyhole.

The surgery and recovery for me was all ok , it’s just the emotional stuff that got me and the cancer scare .

Being told you might have cancer at the doctors broke me nearly and having it done at a cancer hospital it wasn’t looking great for me.

Awaiting ‘urgent surgery’ which is a joke .

It’s on my bowel , my other ovary, my endometriosis hasn’t been dealt with , my periods are hell.

I don’t know how long I will be waiting for surgery as my consultant doesn’t know how long either .

I think had heard of endometriosis but never knew it could make so much damage to bodies , and obviously doctors do not take us seriously, the lack of care I have received is actually shocking , no one has told me anything about my condition Iv had to research it all .

Always request your mri results , as they don’t tell you certain things .

If you need to message me feel free .

[mjawb4 in reply to Jade2006]

I am so sorry you had to go through all of that, I bet you are very emotionally scarred! 😔 sounds like you have had an awful experience and not even had the pain dealt with and the right support given.

Seeing the “urgent 2 week cancer pathway” on my medical records was enough to make me sick! Very lucky everything seems to be malignancy and nothing scarier than it already is.

I will definitely request the full MRI results!

I am worried about a laparotomy instead of laparoscopy due to the size of the cysts, but hoping now there’s nothing cancerous they can work with a laparoscopy. Loosing ovaries is another worry, being only 24 I never imagined being in this position.

I hope you aren’t waiting long for surgery and everything all goes smoothly! xx

[Nadine2]

I went through the same thing 10 years ago. Mine were 10 cm in size and removed via key hole surgery. I had a scan a few months later and the cysts were growing back, I was advised to go on the pill to stop the growth which was upsetting as I was trying for a baby at the time. I have been on the pill since and seems to work for my symptoms but ask for all treatment options as I was basically left to cope after that. My ca125 was raised too which freaked me out, endo was never mentioned at the time and I thought I had cancer! Glad they have mentioned endo to you.

Best of wishes,

Nadine

[mjawb4 in reply to Nadine2]

that’s reassuring to hear it was done via keyhole, I am worried it might have to be more invasive surgery due to the size but I suppose they can work magic with a laparoscopy!

I have been told about going on the pill after having surgery to stop it from growing back, I would definitely like to know of other options too as being on the pill previously, I feel it just masked the symptoms looking back. I’m glad it’s working for you!

The CA125 is very scary to see, my original gynaecologist refused to do anything until cancer was ruled out and I had to go elsewhere and basically start over!

[Elaine1001]

I had exactly the same but mine was 18cm and a few others that was sinister. I’ve already had hysterectomy 15 yrs ago but they left my ovaries. I went through all the cancer thing and scans. Within around 6 weeks I had open surgery however, it was abandoned due to complications and they couldn’t remove it. The cyst as gone around my side, my back and wrapped itself around my bowel and everything is stuck. This all happened on October 6th. I’m now with a different hospital and awaiting more surgery. They are going to try keyhole but, I think it will be open surgery as, I may have a stoma. They been doing scans and I’m on the urgent list. I do hope you get yourself sorted out.