question is there anyone out there ended up in a wheelchair because of endo ? I have severe stage 4 and after a year of very limited mobility and basically being housebound I have been referred for a wheelchair. I have adaptions being made to my home, I haven't worked for over a year now, and even though I try to do things most of my time is in a bed. when I walk its with a crutch and I fall a lot and get exhausted after a very short time. its strange to think that 15 months ago I was a totally different person, I collapsed one day and nothing has been the same since. I am not going to bore you all with the details but nhs docs actually apologised to me as they can do nothing for me, I went private and while a doc agreed surgery risky doesn't come close to describing it, pelvic evacuation they call it and then theres the joy of being left with a pee and poo bag after for at least 6 months, that's assuming I wake up, there are many other risks and I have been told straight they expect complications. the private doc works nhs for his day job and so been referred back to nhs as they will only do surgery in one specific hospital because it has the best intensive care unit in the country ( haven't mentioned names cause don't believe im allowed here) anyway when I told my mum that I have been referred to a pain clinic for morphine she told me that im not bad enough for that, that her sisters have died of cancer in real pain and that's not what im in, then when I told her that im getting the wheelchair she told me that I have hurt her, don't know what im meant to do with that. the idea of the chair scares me, terrified that once in it I will never get out. I feel at this point I should say my mum is great, helps me so much which is why it has upset me , quite literally cried all night, if that's what my own mum thinks then what does the rest of the world see. i have been told that if you put endo on a scale mines is as bad as bad gets, its everywhere and has done so much damage to my insides im told i will never get better. i just need some support, someone that understands, my family are great but we are dealing with a lot of other things and they tell me that they only cope because they know how strong i am, how do i tell them im terrified, scared of the surgery, scared of leaving my son, scared of the life i will have if i don't have it, my symptoms are getting worse, im struggling with getting to the bathroom now, my husband comes to all my docs appointments and i cant bare to tell the doc with him in the room, im not looking for anwers, not looking for anything, just needed somewhere to shout, to scream. to rant, too cry. goodnight all and wish you all a pain free tomorrow xxx
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