I had my laparoscopic ovarian cystectomy done yesterday. Diagnosed with stage 4 endometriosis 😞😞 it just keeps getting worse and worse for me . ... I am at total loss ...
How do I manage now ?
Any and every advice would be greatly appreciated ladies ...
Thank you ...
Hi deeann, it will all take a while to sink in. I too was diagnosed stage 4 in June. Take the time you need to rest and recover fully from the op. Follow Lindles advice re treatment pathway and what you do from here on in, if you do, it will ensure you are seen by the right people in the right place and get the best treatment. Feel free to message me anytime x
Thank you very much for your reply . I will try to use all the resources available . I am shocked as my original Gynecologist didn't think it was so bad , he didn't even take his time to explain many things it is just yesterday after my surgery when the operating doctor grabbed my hand and delivered horrifying news . Stage 4 endo assuring me he did everything there was in his power to help me ...
What's next ? My head is spinning ...
I know, it's so much to take in. If you are not already being seen under a BSGE centre (your gynae should be referring you, on finding stage 4 but many fail to do so) you can ask your GP to refer you. Did he treat you, if so do you know how ? Because of the complexity of severe Endo the gold standard is complete excision by a BSGE surgeon and often a multidisciplinary team because the bowel and bladder can be involved. In a couple of weeks you can request a post op report from your GP where you can find out exactly what was found and where and if they treated it. There may be a charge for this. Have they said you will have a follow up? Lindle posts on the treatment pathway has the links for BSGE websites where you can find the nearest one to you.
I am not exactly sure what was treated as spoke to surgeon shortly after waking up and having heard stage 4 things when blank in my head . Tons of tears and disbelief! I was told that I would receive exact report and will have follow up appointment to see him within 3 months .
I will follow Lindle and every advice she has to offer as long as she is willing to do so .
Thank you so much for all your advices and help .
Hi Deann
I'm sorry to hear how upset you are, I totally understand. I was diagnosed with stage 4 as well and i was horrified and felt so helpless. My original gynae who did the explotary lap sent me for a scan to see if it was inside any of my organs ( I would hope yours would do the same) there's no point in operating again unless they know the extent. I've been referred to a BSGE specialist in aberdeen, he is much more knowledgable than the first. He's told me he plans of cutting out all of it if he can or as much as possible. If you have any questions please feel free to ask ? Xx
Thank you so much . I sure will be asking many questions; want to recover right now , need to make my peace with diagnosis and move forward... Need to find a way ...
Has surgery not worked for me?
When is surgery necessary?
Surgery making endo worse? 
Private surgery costs?
Stressing out over surgery! 
