Ongoing Care

[Tangoandmax]

Hi all,

Hope you’re all having a pain free day!

I received good news today, three weeks post lap, biopsies confirmed endo and nothing sinister. Isn’t it strange considering the diagnosis good news - it is though after years of ‘there’s nothing wrong’.

I’ve now been discharged back to the care of my GP. I had an impromptu follow up with my consultant last week via telephone however I am a little perplexed by the lack of actual follow up, specifically once healing is complete. The consultant is very confident they have removed everything and detached the tethered organs. She’s said if there are any issues with persisting symptoms after 10/12 weeks just get the GP to refer me back to the specialist centre but that seems a little backward. I’ve been advised to remain on current contraceptive to stop ovulation - which I’m ok with.

I’m just wondering if anyone has Endo/Adeno treated as a chronic condition and receives continuous care or is this the complete norm? Referral, investigation, treatment/surgery and off you go until it rears its head again? Where people are left to battle waiting list after waiting list. The reality of the diagnosis is really kicking in, people keep asking if I’m fixed, is the pain better now and at this point I’m having days much worse than before surgery but it’s only been three weeks so it’s absolutely going to take more time. Having to explain/come to terms with the fact I might not be fixed is incredibly hard given the impact to my day to day life.

Trying but struggling to battle those negative thoughts away!

[AllthatGlitters]

Hello I have adeno and endo and don’t receive continuous care. If my symptoms get unbearable I book a GP appointment and go from there. I do have a yearly check in with the pharmacist at my doctor surgery about my medication but this is a phone call. Hope that helps 💛

[Tangoandmax in reply to AllthatGlitters]

Thanks for responding. I just find it really odd, other chronic illnesses are treated in an ongoing manner. Baffling x

[LME5]

Hi there thank you for sharing your experience post-surgery. Typically speaking, it seems to be common place in the NHS to "discharge" patients post-surgery. Which makes absolutely no sense whatsoever. Even with a highly successful surgery, it's not a cure. Some women may experience symptom relief. Others feel no different. And then there are those who feel worse off or start to experience new symptoms. Every surgery has post-surgical risks & complications. But if a doctor deems you "treated", you're let go from their care. I believe the way back in is to ask your GP to re-refer you. Of course, you have to provide reasoning for the referral. It's ridiculous, but it is what it is. We're all constantly on-and-off the merry-go-round that's NHS gynae care!