Surgery couldn't remove cyst - what next?!

[Sidneyd]

Hello everyone,

First post from me though I have been reading for a while!

I had surgery in September to remove a 7cm ovarian cyst. I am fortunate to have health insurance so had only experienced pain for about three months previously (but it was agony!). I've had heavy periods all my life (I'm 50) but no pain that would indicate that I have Stage 4 endo! The surgeon said I have nodules, adhesions and a cyst, and my organs are all fused together. He was unable to remove the cyst and ovary as he'd planned as the adhesions were too bad. So he drained it, ablated it and put me on to Decaptyl.

However the pain never stopped so yesterday I had another scan and the cyst is still there! It's reduced to 4cm now but still there... I have been told that more surgery is too dangerous due to the adhesions. The cyst isn't as painful as before but still painful.

My question is - can you just live with an ovarian cyst with no surgery? The pain is constant but not intolerable compared to before. Do cysts ever go away on their own?! Has anyone experienced this?

I feel a bit overwhelmed as I have been healthy all my life and now I feel like I will never be well again!

Hats off to all you ladies who deal with this all your life....

[Lindle]

The endo is embedded in the cyst wall so draining it will only remove the blood products inside and not stop it regrowing. It needs excising - that is, the whole cyst capsule needs stripping out which will take the endo with it.

Any decision about the other stage 4 (nodules, adhesions) isn't based on how dangerous it is but on a balance between surgical risk and your quality of life. Severe endo must only be treated in a multidisciplinary specialist endo centre and not all private insurers cover treatment as a team of surgeons is required and it is very costly.

GnRH agonists such as decapeptyl may help keep the cyst at bay but you can only take them for a max of 6 months so there needs to be a plan for afterwards. I assume you are not menopausal yet but endo can continue after menopause and it would be best to consider having the cyst excised as there can be an association with malignancy. As to the other stage 4 as said it is determined by the quality of life and deep infiltrating (nodular) endo can become non-progressive. Will pm you as to how to get feedback on surgeons/centres. x

[Sidneyd in reply to Lindle]

Thank you so much that's really helpful. The private consultant I have been with does not work with a specialist centre in his NHS role, and as you say, none of the ones that do are accredited by my insurers - so I guess my insurance is not going to help. I have asked for an NHS referral to his gynae clinic, but that is secondary/general, so I guess I need him to refer me on once I get to the top of that list? Or can GPs refer you directly? Sorry for all the questions but you seem to know what you are talking about!

[Lindle in reply to Sidneyd]

Referral procedure depends on what country of the UK you are in?

[Sidneyd in reply to Lindle]

I'm in London thanks!

[Lindle in reply to Sidneyd]

Oh good - you have lots of endo centres and referral is through GP or secondary care in England. Lists are very long especially with Covid but the sooner you get in the system the better. It's not allowed to give feedback on here and please be aware that if anyone pm's you a list from a US Facebook group for UK women it's not reliable. I can give you a more reliable source. Have pm'd.