Age 20, Large Endometrioma? What does this mean?

[ElB2000]

Hi, I’m 20, after having pain, ultrasound, bloods and urgent MRI, I’ve just been told I have an 11x9 endometrioma cyst, I’m on the waiting list for urgent surgery and my ovary also to be removed. If I have an endometrioma does this mean I have endometriosis? Or is that seperate? I’ve tried googling and not found anything that makes sense to me. I haven’t been diagnosed with anything, only a quick call to update me from my MRI that I have an endometrioma and will have to have open surgery, Will this mean I’ll struggle to get pregnant one day if I’ve had an endometrioma? And one ovary? Please help x

[SunshineSylvan]

Hey! Oh bless you, it’s always such a worry when they start throwing words at you but not explaining. I was told I had an endometrioma but they didn’t diagnose endometriosis until they did my surgery - I think you can have one without the other. I have no endo symptoms other than infertility and the odd spell of pain. I believe that you can still get pregnant with just the one ovary. And lots of people with endometriosis can fall pregnant easily. Try not to worry too much, I know it’s easier said than done but whatever happens - you will be okay xxx

[ElB2000 in reply to SunshineSylvan]

thanks so much for replying Xx

[Lindle]

An endometrioma is endometriosis. It can also be called an endometriotic cyst. There are 3 types of endo - endo affecting the pelvic lining (peritoneal endo), ovarian endo which is what you have and deep infiltrating endo which is when the disease infiltrates at least 5mm beneath the peritoneum or other structures, which might be outside the peritoneal cavity as well. Please be aware that endometriomas are often an indicator of deep disease elsewhere.

Are you being treated at a specialist endo centre as gynaecologists in general gynaecology who treat endo only have a special interest rather than advanced skills and should only treat what are described in guidelines as 'uncomplicated' endometriomas. You have a large endometrioma and this should be treated in a specialist centre where they will use laparoscopy and will aim to retain as much of your ovary as they can. Clearly having a whole ovary removed could impact your fertility and should be avoided.

You really need to discuss referral to a BSGE accredited endo centre with the consultant or your GP where they have the advanced skills to treat you in the best possible way to preserve your fertility. If you are in England the treatment specification is below:

england.nhs.uk/commissionin...

I hope this helps.

[ElB2000 in reply to Lindle]

Thankyou xx

[Lindle]

The list of centres is here:

bsge.org.uk/centre/

[MMich15]

Hey, I agree with Lindle - even though your cyst is very large a specialist would try and remove it via laparoscopy and save as much of the ovary as possible. I had a 12x12cm endometrioma and though I didn’t get to see an endo specialist at a BSGE clinic (nhs refused to refer me) the one I did see was a fertility gynae and he made saving the ovary a priority because losing it will effect fertility. They told me there was a risk of open surgery but they’d do what they could to remove it via laparoscopy. Also they tend to advise you to have GnRH injections in the 2-3 months leading up to surgery (zoladex or decapeptyl for example) because it stops periods and just “cleans up” the pelvic cavity to make surgery a bit easier.

My advice would be don’t rush (I know it’s hard when you have a big cyst that needs to be dealt with) but push back on anything you don’t feel comfortable or have concerns about. I wish you all the best and hope the cyst is removed soon.

[ElB2000 in reply to MMich15]

Thankyou xx

[dawntildusk]

Hiya. Check if your surgeon is on the BSGE list sent above. Your endometrioma is of a size where it is important that it is dealt with by a specialist. If you can ensure this they will have the expertise to remove it thoroughly and maintaining your ovary if it is safe and viable to do so.

It is thought that having an endometrioma is indicitive of further endometriosis, and this was the case for me. I know it is a lot to take in but the one thing i would say is please do not let a general gynae surgeon perform your operation. X

[ElB2000 in reply to dawntildusk]

Thank you xx