Hey, has anyone else watched the new BBC documentary on the insane waiting lists for NHS treatment? I've just finished it and sat balling my eyes out at the 2 endo ladies in particular.
I remember the admin asking us all on here to contact them about contributing to that programme, so if by any chance you're both on here and reading this... I want to say what warriors you are, and how intensely grateful I am that you shared your stories. I can show this programme to people I love, and they may understand how I feel a bit better. So thank you. I honestly resonated with every single word, particularly the lady who is still waiting for surgery. Being left in crippling pain like this truly is mental torture, and I can imagine the strength it took to be vulnerable on TV like that. Huge respect!
Watching it made me genuinely upset, because I can't believe we're all being left like this. But also made me feel better too, because I'm not alone in it either. For anyone feeling like I do right now, depressed and anxious, angry and abandoned, please know you're not alone.
Sending love
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CryBaby91
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Wonderful words, I'm yet to see the documentary but very keen to (especially since reading your message!). So glad the documentary resonated with you and will hopefully help you to explain what it is like living with endo, to your friends and family. I've found that sharing stories and articles has really helped people to understand. As you say, we're not alone!
I have seen it and cried too! As yes I resonated. But still beat myself up questioning how bad I was and whether my symptoms are endo/adeno/fibro/ibs- how its my fault as I didn't eat the right thing again!! As they have found Adenomyosis which gets little voice and endo is only diagnosed on lap and often missed on scans, at least I know its not all in my head- yet again I am not given any support to even navigate this and am informed by the person who did the scan not by a consultant. Even this 2nd endo specialist referral is not feeling great for me.Anyway I also saw more women on bcc news last days also and I watched thinking I hope people in my life see this then they may understand and come back to me with some compassionate understanding, many having gotten fed up with me and put me at a distance now. I am feeling pretty isolated at mo and now am feeling my mental health is exacerbated with no careplan and the latest dismissive and factually incorrect letter to gp.
Its the little things like I am told nothing shows up on MRI in march. The I have vaccine and bleed in July ( even though I am too old to bleed now- also too nervous to have 2nd one now) ...then a new investigation with trans vaginal scan shows adenomyosis. Yet the consultant then writes saying was discovered on the MRI months prior - this was not written or told to me- discussed- I had a consultancy based on negative results!
And only in August is it acknowledged in this factual incorrect confusing way with again minimising the impact on myself with mild findings- yet we all know that this disease can often not be seen on imaging and the stage of disease doesn't correlate to the pain levels.
How are you then supposed to trust anyone! Given 15 min call appoints ( only 2 this year after discovery of large cyst on ovary last oct and all endo symptoms- when the 1st consultant ( last oct) just wanted me to sign on the dotted line after a 10 min chat and take out both ovaries and dismissed endo symptoms as in my head and examined me inappropriately... I was traumatised after this appointment and then pushed for endo specialist gynaecologist.
A year on and still I have no help even by way of any dr. explaining the conditions or actioning hormone therapy all my support is online or google as they seem to know Sw.F.A ! Next appointment is in dec ( last August!) . Sorry about the rant...im low with it all today. I really hope this programme and others come to the fore more as im loosing hope at ever having a life again and will end up even more isolated getting no help as I have for over a decade! Im too exhausted to help myself and keep going with all else at the mo but know I need to advocate harder. This is the part of the journey that adds more stress and therefore pain on our conditions I feel.
Oh love im sorry you're having such a shitty time it makes me even more upset to think of how many of us are just left in crippling pain because it's not considered life threatening. Can I ask, are you in a position to pay for a private endometriosis specialist? That's what I did after 10 years of being totally ignored and told the same as you. I paid to see the best one in Yorkshire, made sure he had an NHS list and then after just 1 appointment he wrote to my GP and now I'm his NHS patient. I still have to wait for my diagnostic lap, which I've been waiting about 2 months so far officially (longer with symptoms obviously but on the list 2 months) and been told I have another 4-5 month wait. But, my consultant is SUPER supportive and really helpful, he's put me on his emergency list and assured me that the second he can operate he will. I also know he will find anything that's there because he specialises in stage 3 and 4 endo. I know it can be hard to keep fighting babe, believe me I do, but please don't give up. If your docs aren't listening then make a complaint and quote NICE guidelines at them. Ring PALS and cause a fuss then get yourself a second opinion with someone who you do feel is taking you seriously, you deserve answers babes. I hope you get them xxx
I thought it was sad but I refuse to remain helpless whilst I wait for surgical intervention.
Medically helpless…well in the sense that surgical waiting lists are huge. BUT it’s made me look at other aspects of health such as mindfulness, my mental well being, supplements, essential oils for relaxation, tummy massage and nutrition.
There are things we can do to help ourselves and I won’t give up trying and looking for ways to be whole and well. 💪🏻💛
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it makes me even more upset to think of how many of us are just left in crippling pain because it's not considered life threatening. Can I ask, are you in a position to pay for a private endometriosis specialist? That's what I did after 10 years of being totally ignored and told the same as you. I paid to see the best one in Yorkshire, made sure he had an NHS list and then after just 1 appointment he wrote to my GP and now I'm his NHS patient. I still have to wait for my diagnostic lap, which I've been waiting about 2 months so far officially (longer with symptoms obviously but on the list 2 months) and been told I have another 4-5 month wait. But, my consultant is SUPER supportive and really helpful, he's put me on his emergency list and assured me that the second he can operate he will. I also know he will find anything that's there because he specialises in stage 3 and 4 endo. I know it can be hard to keep fighting babe, believe me I do, but please don't give up. If your docs aren't listening then make a complaint and quote NICE guidelines at them. Ring PALS and cause a fuss 
On waiting list for hysterectomy !
Now on the waiting list for hysterectomy!
10 month wait on NHS...should I go private?
Northern Ireland waiting list for hysterectomy.
