HELP :-(: Hi, I'm just looking for advice... - Endometriosis UK

Endometriosis UK

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HELP :-(

Wilson09 profile image
5 Replies

Hi, I'm just looking for advice on how people are coping with their pain, I have stage 4 endometriosis and I'm in pain most of time, I take codeine when needed and 1x 10mg amitriptyline at tea time, if I take it any later I struggle to get up when my alarm goes of the next morning.

I've just an MRI and I'm back to see my consultant in January, my remaining ovary is attached to by bowel wall and it all sound really complicated not sure where to go from here as I don't want to end up with a stoma bag.

any advice would be helpful.

TIA x

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Wilson09 profile image
Wilson09
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5 Replies
Tillyfloss profile image
Tillyfloss

hi. How are you doing? Getting pain management right takes some doing. Do you have endometriosis on your bowel? I was the same with amitipline made me really sleepy! It did help with the constant pelvic pain. Are you under a Endo specialist? The first hospital I was in said I would need a hysterectomy, the specialist sorted it out and even saved the ovary that was damaged. Ask to see the pain team they were brilliant with helping me get on top of the pain. Xx

Inayah786 profile image
Inayah786 in reply to Tillyfloss

That’s super reassuring I have my lap soon and really hoping for a similar outcome

Inayah786 profile image
Inayah786

I’ll follow this thread as I’m pretty much in the same boat.

jelleytots10 profile image
jelleytots10

Hi, I have stage 4 endometriosis on my bladder, bowel, uterus and left fallopian tube (my bowel is stuck to my uterus). I’m currently on Zoladex injections until my operation, which has helped my pain massively but before that i was taking Naproxen 500mg with omeprazole but i found that codydramol helped too, i also relied on heat and found my hot water bottle or having a hot bath helped a lot. I hope this helps and hope everything goes well for you xx

laurenrosse profile image
laurenrosse

hi, i was in excruciating severe debilitating pain from my endo the last 4 months, usually i am pain free even though i had a chocolate cyst on my left side... 4 months ago it twisted and i had a lap, it was unsuccessful and left me basically crippled with pain. i had to take 20, 200mg advil daily just to survive. Then i was put on PROGESTERONE ONLY BCP, norethindrone, 10 mg a day(5mg twice a day) and this took most of my pain away, but still felt the endo weight inside, the BCP only masked the pain, but i needed it... even though i did not have pain on the BCP, it still took about two weeks to kick in but the progesterone only BCP worked pretty well for me.... just got second lap done two days ago and doing GREAT NOW!!! can feel i will be ok.... just got a new lease on my life.... they removed my left ovary and left tube... excised the endo off my bowel and intestines and now i am a happy girl again!! wanting the best for you... i use advil liquid gels, 200 mg each tab...i take 5-7 a time and am pain free for about 6 hours... only thing that worked befor the BCP... best wishes, Rose

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