I'm I doing the right thing leaving endo alone for now?

Hi ladies. I'm I doing the right things leaving endo for now? I'll try to keep it short. Diagnosed With grade 4 endo and adeno and choc cyst on both ovaries, it was found while I was having my appendix removed. I have always had horrible periods since day one, anyway in 2012 I had a sarcoma removed of my forehead and sculp and it has left a 16-14 cm scar and permanent hair loss as they went down to the bone. I'm now 3 year clear of the cancer and they are going to put tissue expanders under my sculp and stretch skin to put my hair back. This January I went in hospital to have endo removed and maybe ovary removed. After surgery I was told they didn't remove endo as there was to much and it would be difficult as it was on bowel bladder stomach , they removed my right ovary and fallopian tube and unstuck my left ovary from my bowel. They said I need to either have mirena coil or injections , she said the Pop wouldn't help me ?

My problem is I'm 43 and I know that I'm not good at taking hormones. I have in the past tried everything and it made me a monster. I'm really worried as I going for this hair reconstruction and messing with my hormones at the same time would send me over the edge. Any advise would be lovely xx

6 Replies

  • Hi hunny, I'm pleased to hear your cancer free, and that they can help with your hair,

    Are you being treated by a endo and adeno specialist, would a hysterectomy help you?

    If you think that the hormones are going to be bad for you, ask for other options,

    Good luck xxx

  • Thank you for the reply. Its just gynocolgy that I've been seeing. The hair treatment takes 5 months all in all ? Mybe I should ask to be refered endo specialist ? ️Xx

  • It sounds like you have a lot on your plate at the moment. I had a laproscopy where they couldn't remove all endo for similar reasons and that was over a year ago. I was put on zoladex injections straight away but only stayed on them for 6 months as I felt so emotional on it. I am now on the pill and I feel a lot better. I think it is very individual. My consultant said it is about quality of life so if you are having difficulties such as pain or constipation then you may want to consider further surgery, however if these are not affecting your quality of life then maybe you can leave it for now. My kidney is dilated due to a blockage in my ureter caused by endo and I have pain before and after opening my bowels as well as constipation. My consultant has referred me to an endo centre for further treatment. I have changed my diet and that has helped a lot. I hope you are not in too much pain. At stage 4 I don't think endo can really get much worse so I think it's more about quality of life although that is just my opinion. If it wasn't for my kidney being affected I would probably not have been so bothered about having further surgery. Good luck to you. My advice would be to get referred to a specialist centre if you are considering further surgery.

  • Thank you. I'm not suffering too bad , I had more pain years ago? I just worry that if I keep on have periods it's going to do more damage??


  • Yeah I completely understand that - I run my pills together so only have 3 or 4 periods a year. I personally am trying to reduce the oestrogen I put into my body through diet and am also going to look into the cosmetics I use too. I have stage 4 too and was overwhelmed with it at first but it's over a year since I was diagnosed now and I am trying to do everything I can (that is within my control) to prevent it getting worse but ultimately I know this is not all within my control and I have found that hard to come to terms with. Even with surgery, this results in scar tissue so there's difficulties with whatever choices we make :-/ however I made the choice to come off zoladex as it just affected my ability to do my job and relationships as I was tearful all the time. But that was tough as I felt I was making a choice that would make my endo worse. I really feel for you, I've been there and the decision was hard.

  • Thank you for reply. That has help me relax a little more and I've decided to get my head sorted first then tackle endo last ️xx

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