Dealing with this life

Hey,

I've posted here before and use this as an outlet as it helps. Im just struggling with how to accept this as the rest of my life at just 22 :/

How do people deal with it? Any advice and help would be great, I just don't know how to fight this for the rest of my life right now, I wish I was normal and didn't have to keep fighting this, it's dampening my life just as it's beginning :/

11 Replies

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  • Hi there Meggh, I'm sorry you have this awful disease :( I've had endometriosis for just over for 12 years and had 6 laparoscopies and now have pelvis adhesions due to the surgeries.

    I am only now having pain management as my specialist refuses to operate again so soon after my last op (Nov 2015) I've been on zoledex but it made me feel awful so stopped that after 4 months.

    I've tried many meds and now on tramadol, paracetamol and naproxen when it's bad and just codeine for normal everyday pain. And it seems to work although I can't work when it's bad. What meds are you on or have tried??

    I also think the same as you how can I go through life like this for the rest of my life but I think we just need to try different meds to see which one is best for pain management and then seek treatment in between. I've just been diagnosed with joint and nerve pain so I'm on pregabalin now too.

    What treatments have you had? Is your specialist good? Big hugs x

  • Hey there,

    Ohhh no I'm sorry to hear that! I do worry about that with the surgery! Did they help at all though?? I've heard mixed things with zoledex and am not inclined to try it if i'm honest! Thats a heavy route to go down i.e the pain relief and so difficult with the not being able to work. I currently have a full time job and simply just refuse to let this take that away. Unfortunately i currently am only keeping a retail job as a bookseller as it requires little thought at times which i need as i'm distracted by endo a lot. I'd like to do more having just graduated from university last year and get a job in my field but i simply can't focus on that until i can find a way to manage this pain.

    I'll just copy and paste what i posted below: "So I had a lap april last year and i overlap on the pill for 6 months at a time so only have 2 periods a year to try and prevent endo forming. I've been on dihydrocodeine but that didn't work, over the counter pills don't work. I've recently started amitriptyline and am trying to work out the right dosage but its not helping much at the moment. "

    - Amitriptyline helps with neuropathic pain so i have to try it as the gyno thinks thats the cause of my pain so until i've tried it for a few more months they can't rule that out and refer me back to the gyno again (gotta jump through the correct hoops -_-). Though i don't think its neuropathic as the amitriptyline doesn't seem to get rid of the majority of it, especially not when bad.

    I've not got a specialist and have no idea how to find one through my doctors who seem to care very little in all honestly.

  • Agree it is really awful. Hope you are with a bsge clinic as best chance of help.

    I'm on pain meds but also anti depressants as I feel so low as life is just rubbish with this disease. I can't work Inn london anymore and can't socialise with friends much as the pain is too bad and the endo and the meds make me so tired.

    I try to find small things that help like having my nails done. But it is hard and I'm not sure I can suggest much. Just keep on going and hopefully a treatment will be found soon to help us all.

  • Yes! I agree with Marcia 71.

    Assuming that you are in the UK, make sure that your GP understands his responsibilities about referring you to an 'Endo Specialist' BSGE Clinic. Talk to the trained advisors at 'Endo UK' (link to their website - with contact details - at the top of this page) they can advise you on what to do and say, and to discuss what has already been said or diagnosed about your Endometriosis.

    I hope this helps

  • Thanks this is really useful and I am certainly going to arrange that!

  • Hi I'm 22 as well and was diagnosed this year. I was just wondering, have you had any treatment for it and if so, did it help at all? :)

  • Hey, sorry for the late reply! So I had a lap april last year and i overlap on the pill for 6 months at a time so only have 2 periods a year to try and prevent endo forming. I've recently started amitriptyline and am trying to work out the right dosage but its not helping much at the moment. I've been on dihydrocodeine but that didn't work, over the counter pills don't work. Its not my periods themselves that are causing me the main problem, though everythings a lot worse when i am on obviously, its the constant pain i get :/

    How about yourself??

  • I've improved a lot after my lap in September. Before then I was feeling nauseous almost every day and could barely eat without feeling like I would be sick. That's a lot less frequent now but still having stomach issues. Also because I'm on the pill, my periods don't actually cause me issues anymore but I suffer from extreme tiredness a lot and yeah bowel related stuff. I'm getting nowhere with gastroenterology because they have dismissed my endo as being a cause even though they've not done any scans or colonoscopy. I'm struggling emotionally though with the fact It took so long to get diagnosed and the impact it could have on future fertility.

  • I understand what you mean. Ive been recently diagnosed and I'm only 19 and can't help but think how this will impact me for the rest of my life. It's really upsetting. If you need to chat, feel free to message me.

  • I'm so sorry to hear about your recent diagnosis! Thank you and the same applies to you, message me any time! It is really hard being so young with it all :/ But we're lucky in the sense that new help could come out during our life time so we have a bit of hope! x

  • hi. I'm sorry you are suffering with endometriosis it's a horrible disease that appears to have a mind of its own. As was suggested find your nearest bsge centre, I found it so helpful speaking to someone who understands what I'm going through and a change in medication improved my pain within a few weeks. The other thing I would suggest is looking at your diet. I wasn't up for it and couldn't see how it would help so my husband looked into and it has made a big difference, I'm less tired, less pain most of the month and i haven't been to hospital with pain for the last two periods ( I couldn't walk to the loo with out help and was in that much pain I was sick, couldn't keep pain killers down so kept being taken in for drips). I've only been doing it for 8 weeks but its made a huge difference. It might not work for every one but its worth try. Good luck and don't get angry with it put your energy into finding things that help you with the pain. Xx

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