Endo is winning

Endo is winning. I am so tired of being in pain. So physically and mentally drained. I had the last zoladex injection last month and still no relief from symptoms. Added nausea though! Waiting on an appointment to go back to gynaecology but have been told will be October at the earliest. I'm struggling to cope, doped up on cocodomol most days which cannot be good for me. Nobody takes this horrible illness seriously.

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7 Replies

  • Hi Rach

    We chatted before and I see you're still struggling like me:( So sorry we are both going through this.

    Have you had surgery yet? Can you pay for a private consultation with a consultant? Just an initial chat to discuss things and perhaps they can speed up your next appointment.

    The last 5 months have been hellish for me. The pain and pressure of life on top is getting me down. Hope things improve quickly for us both.


  • Hi Jodie, aww I'm so sorry to hear you are still struggling too. What are your doctors doing now for you? I ended up in A&E last night with crippling pain and vomiting, got discharged with more cocodomol and booked in for appointment with surgeon next week to arrange more surgery. I went private back in January and got put on the zoladex injections but they haven't worked :( I really hope things pick up for you, keep your chin up! Xxxx

  • Hi there sorry you are struggling this affliction is cruel. The pain involved is depressing enough and days can be soo hard. I had endo for so long and diagnosrd at 41 nearly bled to death in hospital at 40 misdiagnosed all my life no hair for ten yrs and no treatment made me feel better than the endo. Ino how hard can b havin my painkillers in min. Had excision 2 yrs ago and was so bad was attatched to my muscles and ligaments as well as bowel bladder and all around womb 2,5 cm thick.endo back and bk to gynea in a mnth. Keep yr chin up hon xxx

  • I know how you feel. It finally got to me yesterday and I broke down in work. I think people are starting to understand now. It's so debilitating and exhausting xx

  • Sorry your suffering and I too have days when it gets the better of me - pain and exhaustion.

    Having seen a number of gynaes I've finally been referred to endo clinic which is BSGE accredited and the gynae still didn't seem to take me seriously but the specialist nurse was lovely and supportive and helpful. She suggested more painkillers and different HRT (I've had hysterectomy and ovaries removed already) and when I saw GP she didn't want to prescribe as she is one of the "just get on with it, the pain can't be that bad!" That was final straw and I broke down so she did then prescribe tramadol and gabopentin as endo nurse had suggested and they do seem to control pain to a level that I can cope. I'm back to see nurse in a couple of weeks so hoping for next steps in treatment and hopefully another lap as it seems the only way to treat endo properly.

    Try your GP as likely to be quicker to get appointment and just be firm that you need help as you just can't live your life. Hopefully they'll help. And give you good pain relief and a referral to a gynae.

  • I'm in agony today...most days. Following my last lap (7th op) in January where the surgeon appears to have done nothing I hit rock bottom. Fed up with pain, letting people down (so I don't make plans), basically life being on hold until after Excision surgery. But I try to take one day at a time, learn ways to not put added pressure on myself and do what's a necessity (feeding kids & clothing them!) Talk to your GP about changing medication & about how this is affecting your mental health. Wish you well lovely xx

  • Thank you all for your comments, it's such a horrible thing for us to live with, made worse by the fact that we are not taken seriously. I ended up in A&E last night with crippling pain and vomiting and still nobody took me seriously. I got discharged with the same pain relief I am already on and it took my mum to push them to get me an appointment with gynaecology next week as although A&E had told them I need a laparoscopy asap they didn't seem keen. It's hard enough as it is without having to push and push to get something done. Xxx

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