Feeling totally lost.

[Ps-endo]

I was diagnosed last year with stage 3 endo, which was excised. My symptoms settled for a bit after, however the last 4 months or so they’ve come back with a vengeance, I had an appointment with my endo specialist today and she’s basically dismissed me that there’s not much more she can do, even after a recent MRI showed more endo, she said I could try Zoladex (which I don’t really want to try yet, as I’m hoping to start trying for a baby early next year) and she’s not keen on repeating a surgery, she also won’t give me any stronger pain relief such as opiates. I’m just completely lost at what to do, I can’t afford a private laparoscopy and I just don’t know what my options are now but I know I can’t live like this anymore.

[Sophs882410]

Hey! I’m really sorry to hear this! Not sure if you have tried your GP regarding pain relief - I have stage 6 endo and I had this problem however when I went to my gp he prescribed a slow release tramadol which you take 1 every 12 hours which has helped me be able to do everyday little things - when I’m flares up I have also been prescribed gramophone know it’s not the best solution but pain wise it does help

[Ps-endo in reply to Sophs882410]

Hey, thanks for your reply. I currently have tramadol but I don’t find it helps and it really disrupts my sleep 😫so in turn I feel awful the following day and the flare up gets worse because I’m so exhausted! I’ve tried most painkillers and nerve blockers too. I just feel completely deflated, I’ve also begun to lose trust in my specialist (endo specialist on the nhs) and not sure what else I can do now!

[Sophs882410 in reply to Ps-endo]

The NHS specialists are awful! I’ve just been transferred back to them because the private hospital can’t do my op because of the severity as it’s gone into my bowel! It took me about 6 months to find the right medication so I know exactly how you are feeling! One medication which has been amazing as it hits the pain a lot quicker and lasts all day is diclofenac suppositories ( not nice to insert) but honestly these have been amazing for me to be able to get on with day to day things please try those out if you give your gp a call they will prescribe them ❤️

[Ps-endo in reply to Sophs882410]

I’m so glad it’s not only me feeling this way about the nhs specialist, I felt guilty feeling like that as I should feel grateful I’ve even got a endo specialist but honestly she’s been so dismissive since my last surgery, my endo was found in uterosacral ligaments, pouch of Douglas, abdominal wall and pelvic sidewalls and she can’t even tell me what stage it is as she said it was all superficial! She “guessed” it’s stage 2 or 3 😫 but from my own research into it, I thought due to the areas it was found it’s classed as stage 4 but honestly I have no idea! She’s been rubbish. Thank you for your advice I’ll definitely call them, the pain during bowel movements is so bad I’m vomiting now ❤️

[Sophs882410 in reply to Ps-endo]

Let me know how you get on but they are so good 😊

[Sophs882410]

they are awful not enough seriousness that goes into what we go through as women and because it’s not external pain a lot of people think we are okay! Yeah I completely understand! But definitely try them anything’s worth a try but they really have saved me when I’ve felt helpless ❤️