What now? Can this be beaten?

I've had endo at least 35yrs. I've had Zoladex for 6 mths. then hyst. plus ovaries removed, excision surgery of bladder, bowels, ureters, further surgery to revise and excise internal hyst scar at which point further endo was found and removed. I've been on Arimidex 6 years - this was great but recently seemed to stop working. Just recently I had about 8 hours of agonising contraction like pains that came and went and I could not move at all, could barely breathe. I am now back on Zoladex as no one knows what else to do. I had the first one 2 weeks ago. I've had 5 abdominal ops in all so any surgery would be fraught with complications and am not sure I ever want to go there again, hoping for a cure that never came! I also have really bad cyclical rib/chest pain which has never been resolved.

This illness is I feel unbeatable but the worst thing of all is the scepticism of others, most especially medical people who know nothing about it.

4 Replies

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  • I'm so sorry - I know so many ladies that have had their endo return after a full hyst and I try to warn ladies who are considering it but I think the hope of the cure is just too strong in some cases. I always hope they'll be okay afterwards but worry about them ending up in this situation, especially those ladies whose ovaries are being left in. What a horrendous reality to be dealing with.

    I've spoken to lots of ladies in your situation but don't have much good news for you. One thing I'd ask them to look for is ovarian remnant syndrome - if a small amount of ovarian tissue is left behind, it can still cause hormone production that leads to endo growth. If there are no ovaries or remnants, I'm not sure what zoladex could do since you shouldn't be creating any oestrogen. I did read a long time ago about severe endo creating its own oestrogen supply - I don't remember whether this was just a theory or a finding but maybe see if you can find anything on this via google?

    Are you on HRT? Lots of ladies have endo come back after a full hyst because they take hrt which feeds the endo. If so, I'd speak to your doctor about stopping this but you need to weigh this up against the risks of osteoporosis etc.

    I feel so awful for you - I agree that you should avoid more surgery if possible since the scarring and nerve damage is likely to cause high levels of pain.

    Have you tried any of the nerve pain drugs - amitryptilene, pregabalin, duloxetine?

    Keep us posted and hang in there - there used to be lots if ladies with post hyst endo on the endo UK boards so maybe try there?

    X

  • One more thing - one of the ladies I knew with post-hyst endo had the same type of chest pain. She had, I think, inflammation of the pleura but I can't remember of they found endo there. I do know that endo can cause collapsed lungs - there's even a name for this. Please get this investigated if you can.

    X

  • Hi and thanks cupcake girl. I have been tested for ovarian remnant syndrome and nothing was found. I also have drugs for nerve pain as well as drugs for kidney/bladder symptoms and bowel symptoms, just to calm things a little. It kind of seems that the more I give my bowel and bladder to do, the more upset they get in course of a day.

    I have never been on HRT, wouldn't even consider it as am far too scared of anything hormonal.

    I already have osteoporosis and am not having treatment - tried all the options for that, all of them upset my digestive system very very badly so that's been given up as a bad job.

    My consultant has agreed to my continued use of Arimidex (a breast cancer drug) for 6 years as it seemed to help me a bit. I have recently stopped that as it seemed to have stopped working as well. As there seemed nowhere else to go, I've ended up back on Zoladex, just to see if it helps, can't be any worse.

    I'm sure there is endo on my diaphragm, under my ribs somewhere but that has never been looked at as I was told years ago it couldn't be endo but I know it is. Pain is cyclical, used to get horrendous rib pains leading up to period.

    Theoretically, I should not be in this mess. My consultant says there is no logic to it but he does accept what I say.

    Many thanks for your support, x

  • ps It was really kind of you to write such a detailed response, many thanks x

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