My family and doctors don't understand or care

[Hazel173]

Sorry this is a bit of a rant but im just getting so fed up of my family not understanding endo and its symptoms. They always just expect me to push through it no matter how bad it is. Two nights ago I was up all night with diarrhoea (sorry tmi!) Which can be normal for me but I spent the whole next day in extreme pain, the pain killers didnt work, and felt very sick. I always feel nausea but this felt worse. They were away for the weekend and when they got back the livingroom was a little untidy, just crumbs from my little girl eating because she wanted to be beside me but I had to lie down or I felt like I would faint. Ive already had one seizure due to the pain meds which has caused me to loose my driving licence and I was scared it would happen again with my kid there. My dad starts shouting about the mess of the place so I push my self to clean up a bit but this then lead me to end up being sick 10 times in the sink while he was in the bathroom. When my mum told him all he had to say was "its not my bloody fault". I am trying my hardest to give my kid a good life and push myself through my last year of uni, im a student nurse. But I just feel like I am failing at everything in life right now. Ive got a meeting with expect endo specialist where I live in a couple of days to hopefully sort out pain relief but no one believes how much pain i am in. My mum said she doesnt want morphine in the house, my dad said morphine is only for people who are dying (he is very stubborn in his beliefs) and my gps said they wont prescribe me anything this specialist recommends. My best-friend just tells me to "suck it up" and is no support at all. I just cant face going through life like this anymore. I am in pain every single day and feel sick all the time. I am constantly exhausted, even walking up the stairs is hard right now. I just feel like noone apart from yous or anyone who suffers endo themselves has any idea what we go through. Has anyone managed to get through and make their family or doctor believe and understand them? I just feel so lost and alone because of endo right now.

[MMary-Moderator]

Hi Hazel173,

I am really sorry to read you are suffering. In addition to this forum we also have our on line support groups and local support groups as well as our help line if you ever need anyone to talk to: endometriosis-uk.org/get-su...

I have had a very similar story to you but over the past few years I have definitely noticed a difference in my family's support. Now I am not saying everyone has changed or the freinds that left me early on are back in my life but I found the more open I was with them about how it was affecting my life really helped. A turning point for me was taking my boyfriend along to a local support group meeting where there was a consultant giving a talk. At the end of it he gave me the biggest squeeze! and said we can do this. I recently had surgery and I had left Endometriosis: The Experts’ Guide to Treat, Manage and Live Well with Your Symptoms book on the side. When I came out of surgery my boyfriend started asking loads of questions to the nurses and then to the consultant. I couldn't understand where it had come from, then he told me he had read it cover to cover!

With my GP I just sat down and wrote a long letter one day to them. I explained the effect it was having on my life, the symptoms, all the different treatments and surgeries. It seemed to open up a two way conversation with my GP.

Best Wishes,

M Mary

Volunteer Moderator