Frustrated

Just wanted some advice. I was diagnosed with endo 4 years ago via lap and removed. 6 months later pain came back. I then went onto zoladex which was great until I took livial. i had zoladex for a while with littlittle success. Had another lap oct 12 no endo found but my bowel was stuck to pelvic wall. Recently went back on zoladex but not worked and ended up in hospital last week with pain and uncontrollable shaking. Went to gynae on monday and is sending me for mri as doesn't Think its endo. I'm convinced it is but feeling frustrated. Has anyone any advice x

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  • Hello, your experience does sound very similar to mine. I was diagnosed with endo in November 2012 after having a lap. After months of hormone treatments which had minimal affect my consultant agreed that surgery would be the only effective solution. I had my surgery in September last year which they found the disease had spread considerably in the 10 months since diagnosis and I had a 3/4 stage. I saw my consultant today after what should have been my 2 month check up which actually is 5 months post surgery who has discharged me. My pain is still pretty much the same and I am terrified the disease is coming back. He seemed very reluctant to hear my concerns and said I should come back if it worsens. I don't understand why I should come back if it gets worse? I'm in pain why wait until it gets worse.

    I am so worried that I'm sitting on a problem when I should be getting it sorted but there is always a reluctance with being considered too young.

    I hope that your MRI shows what's causing you discomfort and hope that it's something that can be simply resolved. I share your frustrations as I understand how you must be feeling. I feel like I've hit a dead end. x

  • I understand your frustration. It seems as though consultants have their own ideas and if you don't fit into it then they just palm you off. I'm sure if they felt the amount of pain we are in they'd soon do something about it. I feel as though nobody wants to know and you just have to give up. I'm concerned that the scan will either show up something sinister or it won't show anything and I will be back to square one.

  • HI,

    It unfortunately sounds like endo but they can only tell by a lap which NHS are very slow to offer and the waiting times are about 3-6 months anyway. When I was on zolodex for 9 months with Tribolene which was amazing, longest I have been pain free.

    In the mean time I found that the pain is helped by Mefanamic Acid and a TENS machine. You GP will easily perscribe you the former and the latter you can get from any large pharmacy. I have had terrible endo for 10 years and 4 surgeries but nothing has worked so far. I also find that Acupuncture helps, it is expensive but gives me about 4 days pain-free.

    Hope that helps a little!

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