I've just found out my endo is stage 4, bilateral. Had contrast MRI and very high CA125 results few weeks ago and results confirmed to be much worse since my last keyhole surgery in 2011. Luckily there's no malignancy showing on scan. But I have endometrioma on left ovary and others on right. Also got a fibroid. And the endometriosis is all over.
I'm getting my surgery on 27th August via laparotomy as it can't be done by laparoscope.
Today went to GP for more meds and was given Amitriptyline to try on addition to Tramadol, Dihydrocodiene and Naproxen which I have to take daily.
Has anyone else tried this and does it work??
Thanks.
Amanda x
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Oamanda6
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Hiya, I've just started taking amitryptiline. I can't tell yet if it's working yet I'm afraid but I just wanted to say that it can make you feel quite fuzzy, which I knew about but wasn't expecting quite as much! I take it about an hour before bedtime but still find it very hard to wake up in the morning and feel hungover. I'm only on 10mg and it's been suggested to take it a bit earlier so I feel better in the morning! Just wanted to give you a heads up on that one. I know it worked for my mum with her chronic pain so I'm going to keep on with it.
The only thing I'd double check is if it's ok to stay on the tramadol - we're all different but I was advised not to take it, but I've looked it up online and the recommendations seem to differ... Maybe I shouldn't say anything as I'm no doctor, but I think it's only because the side effects can be similar.
Just wanted to let you know that you're not alone in being diagnosed it for pain and I hope it works for you soon.
Hi I tried it but the side effects were too much for me I just couldn't stay awake on the stuff. I'd be asleep in 5 minutes of taking it and groggy the next day till lunchtime. I tried taking it at all times of the day but it was no better although it did get rid of the pain. One of the girls in the support group session I went to said she was fine on it and it worked for her. Everyone reacts differently to it but I would recommend giving it a go. I'd still be on it now if I could it was far better then any painkiller I've had
I was put on it for Fibromyalgia it dulls it slightly. Have the mirena coil in since 30th july and I haven't been well 1 day. my doc put me on naproxen but I took a bad reaction to it, so im back on my original 1's etopan xl & still on the amitriptyline along with my painkillers.
I know the pain I am in is surreal it's like a knife being jabbed in my Hip & the front side is like it's being twisted, I haven't had clothes on since Wednesday, cant eat mood very bad i'm freezing hands are like wax all pins & needles & bleeding it's awful. I have 2 more Zoladex injections to get as well, just feel like I should get all out.... Just so Bad..
Hope you don't mind me asking but what age are you & do you have kids? I am 37 & have no kids that is why they wanted me to have the coil fitted, so I would have time to see if I wanted kids, but after the pain I have suffered since getting it in, I really don't know if it's worth it, I would rather be able to enjoy my life (I think) even if it's kids free..... I am single & have other health problems & some days can hardly look after myself. Am I just thinking of myself to much??? I would really like your views.. Takecare..
I'm 35 and have no kids which is why they won't give me a hysterectomy yet. I'm single also have other health issues, so I can definitely relate everything you said.
I would never recommend the coil!! It was awful. I had pain and bleeding all the time!
I don't think you're being selfish, what's the point of life without having a good quality of living. All I would say is don't do anything permant based on a temporary feeling as hysterectomy can't be changed. But there's loads of children and babies out there that need mums xx
Thank-you so much, I know I shouldn't rush into any thing just yet, but you know when your in so much pain you say you'd do anything for it to go away. A Hysterectomy is very permanent fix!!! but as I read more bout endo, it is not always an end because if you go on hrt this can make it still grow. Is there any way to make this a win win ???? Thanks for letting me know your age & all it's nice to know there is others out there with no children that understands.... Take-care.
Well that's my concern as its exactly 2 years since I had my last surgery (laparoscopic removal of cysts). And after that I went on prostap and HRT add in treatment and I'm just after having more serious surgery (full abdo surgery) as my endo is now severe! So in 2 years despite 7 months of hormone therapy, I went from having endo to having severe endo, so I'm wondering whether this treatment does what it's supposed to do. My CA125 levels were through the roof pre surgery. I'm sick of being sick! I just want a normal life, where I sleep, have no pain and feel human. X
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xx
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