How do you get in touch with the co found... - Endometriosis UK

Endometriosis UK

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How do you get in touch with the co founder or lead to this charity?

Jasmin24 profile image

I want to know how do we get in touch with the lead to this charity. So far the treatment as an endo sufferer, has been appalling. Even when following the suggestions from group leaders. They are doing their best, but I'm sick of going round in circles, terrible treatment ranging from GP to hospital gyane, to specialist endo consultants, who secretary who does not respond!

Every step has been as fight and you get to the point, when you can no longer have enough fight in you.

Ive logged complaints GP and hospitals. I've written to the MP. I don't have much hope, if its getting sent to Mr Hancock!

I'm at the very end of my tether, tired of all this going round in circles. I can't work, because I'm a hazard, so currently off sick from work.

It's not a moan, I feel failed by the system.

21 Replies

I hear you! I feel like I could have written this myself! My treatment by GP, gynae, endo consultant and secretary have been the same. Fobbed off and going round in circles, jumping through hoops and more barriers preventing necessary treatment.

It is so wrong! Xx

Jasmin24 profile image
Jasmin24 in reply to 77yellow

I agree. Why isn't there a clear simple care pathway that works!

77yellow profile image
77yellow in reply to Jasmin24

Yeah, there should be! Instead they just fob us off. I was listed for "urgent" surgery 10 months ago and still no date. I don't understand how "urgent" and 10 months can even go in the same sentence!

It's laughable (expect it isn't funny).

Good luck with everything and hope you get some answers soon xx

I think you just click the names on the right side of this page.

Jasmin24 profile image
Jasmin24 in reply to RenRemSasse

Thank you will look

hi hun how's u doing? I'm sorry to hear that ur suffering 🙁 unfortunately I feel ur pain I've been on that train for 24yrs of back n forth with no response! I'm at the point of suing the NHS for neglect! I completely understand where you are coming from when you say you have no more fight in u, I get like that myself. I am also unable to work and have just been appointed pip for endometriosis, it's not fair that our system is constantly failing us?! I hope you get the help u need but if you need to talk please give me a shout xxxx

Thank you. I'm just fed up. I finally got to speak to a specialist, thinking this is the answer to my problems, finally! Already had a op date in place. But he didn't have all my notes, so we had another chat, when he told me, I will be loosing a tube, and other things, which shocked me. I was told this by the gynae in the hospital.I ask for a second opinion and MDT, now I'm being ghosted, knowing I wanted to try with my partner for a child! I just needed to know what further damage is in me, so we can make the right decision.

So sorry, I feel this how they treat patients.

Thank you for your kindness. X

My MP asked me apart from laparoscopic surgery do I know any better way to diagnose this!! Didn’t at all get the point I was trying to make about how long and exhausting it is to be listened to. He was meant to contact me 4 yrs ago regarding hospital waiting times whilst I was bleeding out awaiting my hysterectomy but nothing. Useless. Nobody listens, no wonder we are all so deflated and worn not. Our lives have been on hold for centuries in some of our cases. Makes me mad. Maybe we should all lobby Downing St or something. So fed up with being fobbed off and ignored too. 😡x

Jasmin24 profile image
Jasmin24 in reply to EndoJaz

I does make you angry. I'm sorry to hear about what you are going through. I suppose we all have our own battles. But we are fight the same battle too. X

I mean decades but feels like bloody centuries 😭🤣

Jasmin24 profile image
Jasmin24 in reply to EndoJaz

It feels like a centuries!....

wow you just said how i feel for the past 7-8 years since i've been in this terrible journey. I ve been fobbed and miss-diagnosed so many times the most common was you have IBS go home! now another doctor gave me some birth control pill to test it for 6 months of course is completely useless but i already now that when i have my review with her she will just keep changing them and like this i will waste 2-3 yrs of my life again trying things that doesn't work! I myself cannot work and i wonder if there is something that we can do about i receive some sort of help...i also believe that nobody takes our condition seriously and maybe we should take the problem in our hands to do something about it....force the system to take us seriously i mean for god sake i cannot even stand/sit up for more than 2-3 hr and the nhs just gave me 6 hors of physio session....i mean is a big fat joke to even think that after 6 hours i will suppose to be like new!

Hi. I feel you.

They keep pushing me to have this pill Maexeni, have you tried this? Gyne said it’s either pill or pain management. Before talking about surgery.

You’re brave!

I have been only diagnosed for 2 weeks and I can’t bare the pain. Been to ED twice in 2 weeks. It’s killing me. But then end up sent home just given pain killers. :(

I feel your pain. I'm starting physio tomorrow. I was given a hormonal drug to help with my period. I had an adverse reaction to it. I spent 3 weeks in hospital in December and a couple of days in May.It's their lack of understanding, I was told get a coil fitted, take the pill. Which part of adverse reaction to hormonal drugs do they not understand! And these are doctors!

I've been left with continuous pain, which I managed for years, haven't been about to work, and been demoted, because according to work I am a health risk.

I'm living off sick pay and savings, which is dwindling, as the sick pay doesn't cover the mortgage, bills.

My partner moved in with me, to help me out. I feel like a burden to him and my family, as when on morphine I struggle to do anything.

Thank you, I do understand your battle. We are all fighting the a similar battle. TC x

All so true and people talk about problems with their gynae and consultant, many never even get that far.

Jasmin24 profile image
Jasmin24 in reply to mrskiki

Well you get a lot of gyanes that don't listen to what you are saying. My gyane didn't and advised me that I didn't need to see a specialist!

mrskiki profile image
mrskiki in reply to Jasmin24

Yes, I never really got treated but I think perhaps I was better to have no treatment than multiple random ops by a non specialist ... Bad enough being offered random pills by GP to try to regulate my cycle without any understanding of what was causing the problems.

This is me! It’s awful. And I’m also finding it very difficult now as my pain is getting worse and worse, my diagnostic lap is still months away.. and I have no method of coping 😣 no matter who you tell, they don’t even care

It’s not a moan at all, I feel you to a T.

Jasmin24 profile image
Jasmin24 in reply to Hayayaya

I do feel your pain, truly I do. No day is ever the same. I did have an op dated, but the shear shock of what he told me from reading a fee notes, I as assured I will get the op in July, by his secretary, once I had a clearer idea of the plan.

The last two op were not done by a specialist, but a gyane at the hospital. I never heard of a specialist until 2019!

Why was this info never given to me before? I'm sure I would have made better choices, and would have had a better understanding then, if it was made clear to me what this disease was.

Hayayaya profile image
Hayayaya in reply to Jasmin24

The lack of information and care we are given is absolutely ridiculous.

I hope you’ve managed to see a specialist now..

Jasmin24 profile image
Jasmin24 in reply to Hayayaya

Sorry, just keep pestering them.

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