help please

[5113]

Hi I’m 55 and underwent a laparoscopy last week for an ovarian cyst and when they went in, they discovered widespread endometriosis. This has completely shocked me as I haven’t had the severe pain others describe. Unfortunately I have adhesions all over and they only removed my ovaries and falopian tubes as the uterus is stuck to my bladder and bowel. My ovaries were also very stuck but these needed to be removed. They left some endometriosis on the outside wall of my uterus from what I can understand as they were concerned my bladder would have been damaged. My concern is that after looking at Google I am anxious that any remaining endometriosis may become malignant and that the adhesions may also change over time? I did read this is very rare though?

I’m in a real state about this and wondered whether anyone can offer any reassurance please?

Many thanks

[Lindle]

Hi - was this in a specialist endo centre?

[5113 in reply to Lindle]

No it was a generic gynaecologist

[Lindle in reply to 5113]

Are you in England?

[5113 in reply to Lindle]

Yes

[Lindle in reply to 5113]

Do you know of if was a normal functional cyst or an endometrioma?

[5113 in reply to Lindle]

Endometrioma

[Lindle in reply to 5113]

Endometriomas are almost always associated with deep rectovaginal endo, characterised by the bowel being stuck to the uterus. The left ovary in particular will usually be caught up in it all with dense adhesions/fibrosis. When everything is stuck like this it is called a frozen pelvis and is the most severe form of deep endo. Some people do sometimes report little pain with this. If endo infiltrates an area where nerves are involved and/or when adhesions pull on other structures, especially with movement, then the pain is usually severe and debilitating. But I do sometimes wonder that when everything is stuck solid (and it can be like concrete) maybe there is no movement of the structures involved and this might cause less pain.

I'm really sorry to say but as soon as the surgeon went in and found this they should have come straight out and treated it as a diagnosis of severe endo. Severe endo must only be treated in tertiary care in specialist endo centres by a multidisciplinary team of advanced experts. You should have been referred to a centre and a dedicated scan (MRI or ultrasound) should have done to map your pelvis and identify the locations endo nodules and fibrosis. A discussion should then have followed with you as to risks of surgery versus your quality of life. As you have not had any significant pain it would be unethical to operate.

With regard to the endometrioma this would have formed part of the discussion and any decision to remove the cyst or complete ovaries was a decision to be made in the centre. There is a slight risk of endometriomas developing into cancer, especially in menopause, but there are also risks to removing ovaries that are bound up in dense adhesions, in particular the development of ovarian remnant syndrome which is where viable ovarian tissue is left behind and continues to behave like an ovary. Cyclical symptoms would be a sign of this so just be aware.

So I really wouldn't worry about the cancer risk now the endometrioma is gone. In deciding on whether or not to have the rest of the endo excised this would be a balance of surgical risks and your quality of life now and, as said, if any symptoms are manageable then it wouldn't be considered ethical to operate. Cancer risk wouldn't usually be a consideration in this in so far as not being a reason to operate. All of this needs carefully weighing up and the ESHRE guideline covers it in some depth at chapter X (full guideline - link on the right of the page):

eshre.eu/Guidelines-and-Leg...

In terms of ongoing endo treatment this will be guided by symptoms and if you have concerns in the future you must be referred to a specialist endo centre under the Health and Social Care Act, 2012. This is the link to the NHS England treatment specification for severe endo:

england.nhs.uk/commissionin...

...and this is the list of centres:

bsge.org.uk/centre/

[MaggieSylvie in reply to Lindle]

Lindl, I have read your bio and think you deserve a medal for what you went through and what you have been doing.🎖️

[Lindle in reply to MaggieSylvie]

Thank you so much Maggie. Xx

[5113]

Hi you have been incredible thank you so much. The guidelines were very reassuring. In terms of a referral to a specialist centre if I need it in the future do I ask my GP?