ok so its official endometriosis has taken over my life

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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  • I don't really know what to say but felt I needed to reply. I'm so sorry for what you are going through. It seems so strange that the NHS are giving you such a dim view of what your future will contain. Have you researched who the best endo consultant is in the country? Even if they are private would it be worth just going for a consultation? Your case seems very complicated and I am far from knowledgable enough about endo to suggest anything other than that really. Out of interest when did your symptoms start? Have you always known you had endo? Best wishes xx

  • I have had symptoms for years though didn't know it was endo till last year, consultant I seen is the top of his field ( not allowed to name names) I did research him and he is well recommended. the nhs have gave up on me, im just supposed to accept this and

    while I may never get properly better I owe it to my family and myself to try though im terrifie

    d if it all goes wrong. thanks for you support xxx

  • I'm sorry you're having a tough time vonie. My situation is quite similar, I to have very limited mobility being in severe pain before I would even try to move, I have problems with my hips, knees & legs which started about 3/4 years ago and due to the nhs fobbing me of & waiting times my condition deteriorated rapidly & I had to use a crutch to get about but with these pains caused by endo I find it to difficult to use it now as it pulls on my pelvis & makes the pain worse so I'm not able to get up & about much either like, most of the time im bed bound with the pains. Because of all that my mum started shouting at me when I couldn't do stuff about the house for her saying that I was acting and lieing and I couldn't be in that much pain 24/7 that was a load of months ago and she only started talking to me last week, I know how devastating it feels when your mum says something like that I felt so guilty & depressed & worthless but you need to remember you didn't ask for this & even though your terrified & scared it doesn't take away from how strong you are & I'm sure you are doing your best at coping with this horrible illness. I wish you all the best for the future & hope you find some relief soon xx

  • So horrible, sorry you are going through such a bad time.

    It may be worth getting a second opinion from another endo specialist as some are referred to as the best, especially those that advertise themselves on the net when in fact they are just good at advertising.

    Im sure you have tried lots of things but help that comes to mind is a womens specialist physio, occupational therapist, get yourself a disability social worker to help fund support/care you need and get referred for some councelling. Not because its in your head, far from it, its just hard to be strong through all these massive changes and you need to have your mind in its strongest form to keep you fighting. Have you tried anything like amytriptyline or gabapentin or a tens machine.

    Wish you well, you are not alonexxx

  • Dear me that was so upsetting to read, I wish I could say something other than I am so so so sorry that you are going through all this.I really do mean that, what an absolutely horrific story. Are you the only female in the family who has suffered from Endo? x

    I sincerely hope there is something positive in the future for you, may I ask how old you are? xx

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