Does having an Endometrioma mean I have Endometriosis?

[TTC2021]

After several years of fertility investigations I have had multiple MRI’s, ultrasound scans, numerous blood tests not to mention the debilitating pain I have been in. Finally had surgery two wks ago. I had a laparoscopy, ovarian cystectomy and a myomectomy to remove a fibroid. Just received the results to say after biopsy the 7.5cm cyst was in fact an endometrioma . No other evidence of endometriosis. Does this mean I have endometriosis which has now been removed? Could it come back? No follow up appointment scheduled so I’m still a bit confused?

[Hidden]

Hi TTC,Maybe.

I had an endometrioma that ruptured, and was given a laparoscopy and washout (was suspected as appendicitis). This was at A&E with surgeons who do work to look for things that are immediately life threatening.

On the follow-up appointment with a gynaecologist, I asked if that meant I have endometriosis. She said yes.

Four months later I was back in A&E for pain, and later given a diagnostic laparoscopy by a gynaecologist who knew about endometriosis. I was diagnosed with stage IV severe endometriosis.

When I got the diagnosis, I asked how it could have gone all the way to stage IV in only four months?! She told me she couldn't answer that because she didn't know the results of the first lap. This leads me to believe that if someone is not trained to identify endometriosis with a laparoscopy, they simply won't observe and note it.

If you'd like to, I'd suggest following up with a gynaecologist who knows about endometriosis to ask if it may be possible to properly diagnose it (discuss options, risks, benefits).

[Lindle]

Yes this is a definitive diagnosis of ovarian endometriosis. Whether or not there was evidence of any other endo depends on where they looked and whether or not they took samples from anywhere else. Endometriomas are almost always associated with deep endo elsewhere (usually the rectovaginal area) - any ongoing treatment will now be based on your symptoms. That particular endometrioma can't come back if it was thoroughly excised but unfortunately new ones can grow.

[TTC2021 in reply to Lindle]

Thanks for your response seems odd to have been discharged without a formal diagnosis and not something I thought I’d need to chase. However after doing a lot of reading on here and other forums I now sadly realise this is extremely common! Thanks for your response I will certainly chase this up x

[Hidden in reply to Lindle]

Lindle, wow, what a good answer! You're very informed. Thanks.

[LME5]

Definitely request a follow-up appointment with your gynaecologist... though the fact that they missed an endometrial cyst given the number of scans you've had is worrying! And dare I say, typical of NHS gynae staff.

In which case, I would ask to be referred to a specialised endometriosis clinic. In fact, do your own research online for NHS endo clinics in your area/city and take that to your GP insisting you're seen by someone who knows what they're talking about!

As Lindle advises the cyst may well grow back if it hasn't been properly excised - surgeons tend to avoid doing so if they're not endometriosis specialists, due to risk of damaging the ovary.

Get yourself to an endo specialist and ask them to run their own tests/scans.

Best of luck!