Im stage 4 Endometriosis and Im still waiting for a date for excision surgery as all else has failed to help with the pain. Ive been told it will be at least another month even though that would take me over the 18wk target. Isnt it within my rights to have the surgery privately ?. How would I go about this ?.
Sorry this is a bit garbled Im on a lot of morphine and in a lot of pain.
Basically, Im no longer coping. I cant get on top of the pain even though im on a huge amount of pain meds. I can barely walk or sleep. I pick up my 4yr old from school whacked out on opiates as its the only way I can physically get there. This last flare up has given me pain 24 /7 and im now starting to think there is something seriously wrong ie cancer. Most of my pain is in my back and covers the whole area, as well of course as my pelvis + groin.
I have a lot to be grateful for, blessed with a child for a start but I just cant see beyond this life of pain and knowing I have to keep suffering like this for at least another month feels too much to bear. I was wondering if my doctor may be able to hospitalize me to help me get on top of the pain. I had to take so much medication to get to sleep 2 nights ago that as I was passing out I truly thought I wouldn't wake up again.
Im not looking for sympathy, I know so many of you are suffering just as I am but I really would appreciate any advice.
Thanks in advance. With Love Fiona
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Fiddles44
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I just wanted to let you know that I know exactly how you feel! Iv been in hospital twice in the last month and it's so hard to be in pain 24/7 isn't it. Iv also been taking morphine well oramorph and I'm waiting for a laparoscopy too. It really gets you down.
If your really suffering, which its sounds like you are I would make an emergency appointment or just go to A&E. If you want to go private could you ask your GP for a referral letter? Sometimes they then see you on the NHS after a private consulation to get things done quicker. Try not to worry about cancer, I know it's only natural to think the worst
Hi, Thanks for replying. Its awful when you put yourself out there and no one responds. Easy to understand though as were all in dire straights.
I have been to A+E a few times for a morphine shot as I dont usually have any at home. Most docs are reluctant to give it but for me its the only thing that works.
I also only go as a last resort.
I was wondering if I could get to see an emergency Gyni at the hospital with a view to being admitted. I hate being in hospital as much as the next person but since last wed the pain has been unbearable most of the time. As my post says. I just cant carry on like this anymore. I just dont know what I can do. Ive also got through all the Zomorph I had and I know they wont keep giving it to me.
No problem it's hard isn't it! Yes I only go when nothing else works too, they have given me tramadol and oramorph with an anti sickness tablet now because I went back again in agony with vomiting, before yesterday they said I couldn't take it home. I booked an emergency appointment at my GP yesterday and he phoned straight down to the hosp and asked for the gynae on call, then sent me down. Maybe they will do this for you also? They kept me in the last twice but this time I was aloud home. I know exactly how you feel, it really gets me down.
Hi, I totally know how you are feeling. I'm in a similar position. Something stuck a couple wks ago and since then I've been in chronic pain for the last 3 wks. I'm really worried that the pain is causing damage inside as I had tube remove and I suspect my ovary is stuck. I feel sick with pain. In on my own now as 16 year relationship fell apart for a number of reasons not just endo. I'm staying at my mum and dads but I'm finding many people don't understand the pain I'm in. My nhs appointment isn't until 25 October and it isn't at one of the hospitals on the bsge website. I had two ops at Leeds in the past the last one only a year ago. Things seem to have escalated. I'm actually really scared. I'm not feeling that well at all. I sorry I can't help but just wanted you to know I understand x
I no how u must feel I'm stage 3 endo and feel pretty whacked to running around after a 3 year old I know that u can be put on cancelation list they done that with me and didn't wait as long to have surgery but it was a month like urself maybe if ur in so much pain I would phone the hospital up and ask if they can do u quicker with the pain your in must be awful for u hope u get better soon and good luck when u get ur operation sending loads of hugs your way xx
Hi I really feel for you and completely understand. I have been living with this aweful condition for over 20 years. Something happened four weeks ago and since then I have been on lots of medication every day it is causing a lot of nerve pain as well as the usual. I had an appointment coming up 28 September but phoned the hospital to see if there was any cancellations she said unfortunately not but a day later she phoned with a cancellation and I was seen last Friday. Changed mirena coil as it had been in situ for nearly seven years and it was a different gynae I saw at a BSGE centre I also had other examinations and he has now ordered an urgent MRI scan. Pain really gets you down and especially when you can't sleep. Try and get a cancellation. I really hope you get some help soon.
Hiya, I am in the same boat with regards to pain relief but I am still awaiting a diagnosis, I am dosing myself up daily on oramorph and Anti sickness, I have been given oramorph to self administer and am seeing my doctor on Thursday to possibly change to the slow release morphine patches. It is ruining my life, it has turned me into a snappy horrible person and I am letting my 5 year old son down! I am at my wits end and don't know how much more I can take so I completely understand how you feel! I really hope you get seen soon x
Can you ring consultant secretary, I rang I was in tears on the phone about the pain. She said there was a list and nothing could do but miraculously got called a week later. Month earlier than planned x
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