What do I do next ???

Hi

I got diagnosed with endo before Christmas , I had a laparoscopy to remove the patches that I had , I then waited for my follow up appointment with my consultant, when I saw my consultant I explained that my pain had not got no better which was a disappointment :( she suggested I had the coil and I have a another appointment in a few months , I don't really know what to do now , I have asked to have a second opinion now as this has been going on for over 2 years and I just want to be clear what is happening and what they are going to do next , I'm only 20 have have not be enable to work because of the pain , I'm on strong painkillers and anti depressant and just want my life back ,just wondered if anyone could give me some advice ?

Thanks

Amy xx

5 Replies

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  • Hi there, exactly the same thing has happened to me. It's so frustrating when they send you away with the next thing to try without a bigger picture- it doesn't really feel like enough does it? Like we're just going to have to accept this painful life until something they suggest ends up working. I had the coil put in after being recommended it by the registrar, I'm still waiting to see if it begins to help, but everyone is different and it really does help some women. Perhaps it is worth trying it, but I'm not sure what to suggest. I could have asked the exact same question as you today! I just wanted to say that I understand and you're not alone. xx

  • Perhaps you could go back to your GP, and ask to see the notes about your treatment? That way you should get full details. Whilst there tell him all about your pain, how it is affecting you and your every day life. Maybe he could refer you to a Pain Management team?

    I am almost bed ridden with my pain, on a cocktail of meds including Morphine, and like you, want some sort of quality of life. Luckily I have seen a Pain Management Clinical Nurse and she spent over an hour with me, really listening, and has begun to juggle my meds, find out what is best, what is working, and if anything else can help.

    Sending love and strength to get through this. xxx

  • Yeah it's such a let down when you go and see your consultant and you just want some answers to get your life back , your right it feels like we have just got to cope with this pain , I think anything is worth a go , just hope when I get my second opinion someone can help me , thankyou means a lot

    Amy xx

  • I have been referred to pain management, just waiting for my appointment , I just hope they can help me to get some quality of my life back too , whT kind of things do thwy suggest in pain managment thankyou for your response , hope you get sorted soon

    Amy x

  • I refused to get the coil and the implant... due to personal choices. I just dont like having things "in me". As I'd tried all the pills / injections on and off since I was 15, I was limited as to what I could have.

    I had my diagnostic lap April 2012, and they ablated the endo they found and drained my pouch of douglas which helped. 5 weeks later though, it was apparant it had grown back as my hormone levels were so high!

    Nov 2012 I started a series of Decapeptyl SR jags which have been good. It stops me producing oestrogen and as endo is an oestrogen based disease I've noticed the benefits. I have no periods, no cramp and no bloating. My skin has improved. I took a single dose (one month) at first, then in Dec took a 3 month dose, after this one, I needed to go on HRT at which point I was suffering a bit from anxiety, at times its worth it as I know that (hopefully) when I come off these jags (last dose 21st April to last me into May!) my hormones should "reset" themselves and the endo growth should slow down.

    Em.

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