A little rant: I hope this is allowed? I am... - Endometriosis UK

Endometriosis UK

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A little rant

RueBlu3 profile image
11 Replies

I hope this is allowed? I am feeling very very frustrated with the NHS waiting lists right now.

It feels like I will never get my laparoscopy. I know I have to suck it up and wait my turn because its free, but I've been waiting almost 2 years just to get some help (due to not being believed by doctors) and I'm getting really desperate.

My symptoms affect me daily and they are disabling me in most aspects of my life. I'm only 22 and my family have to provide a lot of care for me. Despite this, I'm expected to exist at home without treatment and just wait my turn... as if I'm not in agony.

Everyday I watch myself deteriorating and doctors will tell me there's nothing they can do because my condition isn't "life threatening".

But its life altering! Most people on this forum know how hard living with endometriosis is. It's not fair! I want to be treated, I want my life back.

I know covid has greatly affected our healthcare system and I understand. But sometimes I feel like covid is used as an excuse at hospitals and gp surgeries to fob people off.

It's hard to feel grateful for free healthcare when it is prolonging your suffering. I wish the NHS could get more funding because the waiting times are horrendous and there isn't enough staff to help everyone in time.

I know it's not their fault - they're stretched so thin and expected to do a mountain of work for pennies. It's just a broken system and I'm tired.

Thank you for letting me get out my thoughts, wishing everyone well through these tough times <3

(Side note: Please don't tell me to consider going private for my care. Financially that is simply not an option for me.)

11 Replies
Rockflower profile image
Rockflower

I absolutely feel for you and others in this same situation as you’re completely right - it doesn’t feel or seem fair people like us, with severe pain and debilitating symptoms that affects us from simply functioning everyday are seemingly left to just ‘suffer and wait’’.

It may not help, but have you considered emailing the patient liaison service (PALS or PILS) at the hospital trust you are under the care at? It’s worked previously for me a few times (but pre pandemic) when I was waiting for surgery and worried about fertility issues due to leaving surgery so long (plus I was fast being unable to work so worried about loosing my job also). Contacting them, explaining my situation did get me my surgery date quicker.

I have just spent a lot of money I don’t really have on private consults because my pain has become severe and debilitating again and trying to decide on wether to pay private for surgery or not - like you say it’s not always an option as it is very expensive. Xx

RueBlu3 profile image
RueBlu3 in reply to Rockflower

Thank you so much for your advice, I didn't know about those services but there's no harm in trying them out. Got nothing to lose!

It's great to hear from like-minded people, but it's so awful knowing how many of us are struggling. It feels like we have to fight constantly.

Take care and good luck with your situation too xx

Stitchrunner1 profile image
Stitchrunner1

First things first, good to rant! Second thing The NHS is not free, we pay for it through national insurance. It is free at point of entry. The NHS is being run into the ground. Check out why. I won't say more than that because this is not the place. Endo is not treated seriously. This is why I joined the Endo society, to help campaign. Getting doctors to understand pain and endo is like teaching squirrels to knit. A physio told me pain doesn't exist! It can't be seen and can't be measured so it is not something Doctors readily bother with. Keep on ranting!

RueBlu3 profile image
RueBlu3 in reply to Stitchrunner1

Thank you! I appreciate your response, your squirrel comment made me and my partner laugh so much!

It's nice to speak to people who feel the same. Thank you for campaigning about endo, it's ridiculous how little known it is.

Blue_Sky12 profile image
Blue_Sky12

I’m sorry you’re having such a horrible time of things. You’re right, the waiting lists are outrageous and not knowing how long it might be is part of the challenge for me. Once you’ve been referred away from the GP you’re just sat in this no man’s land, forgotten and not really anyone’s responsibility until you eventually make it up to the top of the list.

A GP I spoke to once said she had seen some success from patients writing to their consultant or the department they had been referred into, explaining their symptoms in detail and how they affected their quality of life and requesting to be seen sooner. I couldn’t bring myself to do this because I didn’t want to push someone else further down the list when they may have been struggling even more than me! But you sound like someone who should definitely be in front of me on any list!

Either way, it’s always ok to rant 🧡

RueBlu3 profile image
RueBlu3 in reply to Blue_Sky12

Thank you 💛

I was worried my ranting was a bit aggressive or too negative for the forum, so thank you for your kind response. "No man's land" is a perfect description of where I'm stuck right now.

I hope you're okay, I don't deserve to be ahead of you. We both deserve to be seen quickly and get treatment ASAP!

Stitchrunner1 profile image
Stitchrunner1

Hi! Thank you for replying. We will keep on campaigning . I agree Covid is the best excuse powers that be have for de funding and pratting about. I know you have a problem. I can spot a fellow paracetamol addict a mile away. I used to go to different chemists and supermarkets just to get just enough to get me through one period. I had a stash of Ibuprofen that caused a world shortage. As for sanitary protection I once raided a futon shop. There was were not other pads that would get me through a work day. Best of luck.

Cailleach profile image
Cailleach in reply to Stitchrunner1

Speaking as someone who has bought two packs of Paracetamol upstairs in Boots and two downstairs, I would like to point out that paracetamol and ibuprofen are available on prescription. I know that’s not a cheap option if you don’t live in Scotland where prescriptions are free but you can get a fair amount on one prescription and it saves on shoe leather and energy.

Stitchrunner1 profile image
Stitchrunner1

Thank you. Great information.

Msmael profile image
Msmael

I think what’s so frustrating is reading how disproportionate the wait times are - with gynaecological issues often being classed as non-urgent we’re facing some of the longest wait times.

And this is largely due to chronic underfunding of the NHS.

What i want to know is when do we march? When do we protest how unfair this is?

RueBlu3 profile image
RueBlu3 in reply to Msmael

Oh yes, we definitely need a march for endometriosis! It's as common as diabetes according to my endo specialist yet not nearly as well known! We need funding and we need to be taken seriously. Maybe it should take place annually on endometriosis awareness day?

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