⁹Overwhelmed... loss of mobility and medical negligence

[x_emily_x]

This isn't a story I like to talk about or even think about but its the reality I've been forced to live. As with far too many people who have suffered with endo, I've been ignored, dismissed, minimilised and even told it was all in my head when it very obviously wasn't.

Imagination doesn't create visible symptoms like brown blood after stabbing pain (blood cysts) and the rest, (was my arguement).

Over the last 8 months, my mobility has gone from bad to worse.

I'm not exaggerating when I say its now the majority of the month I cant go out to places, far to often I cant feed myself and sometimes I cant even bathe.

The other day I couldn't even feed my cat bless him.

I've had mobility problems like this for a while but this week I had pain in the base of my spine, tingling all over both legs and numbness. It was considered a medical emergency by everyone I spoke to in an attempt to try to avoid going to the hospital. On Saturday I had to go... a&e saw to me quickly and put me in a majors room. They didn't feel overly comfortable sending me home after examination. They sent a letter to my gp telling them to book in with me ASAP and book a scan for my spine to see if endo had spread there.

I couldn't get prescribed meal shakes and I couldn't afford anything as my gp has supported me so little and ignored so much, I don't have pip. My standard UC money which already wasn't enough was actually reduced in August because of an error on their part.

So after going home I went to the pharmacy and rang 111 trying to get a prescription for meal shakes. The pharmacist, bless his heart, gave me some for free and insisted I go back to a&e. The pharmacy which is visible from my house and usually a 3 min walk took me an hour. I called 111 again, they reassured me that its not a medical emergency but my gp does need to see me urgently within the next 3 days so she will send them a letter.

I had an allergic reaction to the meal shakes, spent the weekend starving and contacted my gp Monday to get the help I need.

They offered me an appointment by txt for 3 weeks from now. After ignoring me before a&e and getting these from 111 and a&e.

I'm at the end of my rope. I can't get pip to support myself, I cant feed myself, I cant take care of myself and I find myself even gaslighting myself trying to convince myself it isn't that bad, I'm fine, I can do this, I can make it to the toilet.

Its ridiculous. I am in the process of applying for pip again but I don't think I will get it again because Im having no treatment, no support, no medication I need, food I need, referrals I need.... by the time I do it will be far far too little too late.

I feel I'm being treated 100% seriously by everyone else and my GP is treating me like there's nothing wrong with me and they're just pacifying a drama queen with barely there measures.

I'm worried about the rate this is getting worse as well....

I can't do all this anymore 😓

How will pip check my records and see what I desperately need if I'm changing my practise and starting from square one with a new one? And if my old one has done nothing but neglect neglect neglect?

I've already had to cancel my entire November and everything in it. It looks like the same for December too. I cant even bloody feed myself... I hate my gp surgery. I cant help it, I do. I dont understand why this is happening.

[Moon_maiden]

Hi

I’ll reply more later but fill in the online form on your GP website and copy what you’ve put here, a use them of gaslighting you. Putting it in writing will wake them up.

Also contact CAB to help you with PIP, there is also the UC health payment when you can’t work.

[x_emily_x in reply to Moon_maiden]

I've done exactly that just now, made a formal complaint and they've booked me for a telephone appointment today to get meal shakes so I can finally eat. And I'm currently getting help from an organisation to complete my pip form as it was too overwhelming for me and had 2 extentions already😬 because its been a bad 2 months... its hard to make complaints when these situations are so stressful but after I read your msg I just bit the bullet and I think ill get what I urgently need at least today. One day at a time I guess ....

[Moon_maiden in reply to x_emily_x]

👍😀 that’s great, it’s exhausting though and sorry you are having to deal with so much crap. Unfortunately the shakes aren’t brilliant.

You definitely aren’t a drama queen, it’s real and you deserve the correct help and referrals.

I’ve had to do so much chasing in the nhs, you have to harden yourself against what ‘they might think’ and ignore those feelings.

have you considered Tarlov cysts, they can be linked to Endo, symptoms may fit. You need an MRI as well to get an up to date view of what’s going on.

You’ve got this 🙂

[x_emily_x in reply to Moon_maiden]

A&e and 111 have recommended another scan so I think that will be next. My GP insisted there are no shakes unless you have cancer so I'm confused by that... she was very convincing. Ill have to get a second opinion. Thank you for your msgs. I've never heard of tarlov cysts, ill discuss with the doc when I'm next in as well and do some research xx

[Moon_maiden in reply to x_emily_x]

Your GP is fibbing or really hasn’t a clue. I was given drinks under dietician because of weight loss and not being able to eat much but hated the taste. So GP can do emergency referral to Gastro/dietician and help you get sorted if they won’t give them. Most of the time we have to tell them what’s needed 🤦‍♀️🙄

How are you feeling today?

[x_emily_x in reply to Moon_maiden]

I'm better today, thank you. The GP keeps telling me I need to go private if I want things which I obviously can't. She said I need to go private for any letters about any symptoms ie. A letter about allergies for the food bank as they won't give me food because they won't replace what I am allergic to and leave me with nothing, a dietician, a letter about chronic pain and chronic fatigue for work (why I lost my job) she always tells me I have to pay for it. But I have lived in 5 counties in the uk and this is the only singular practise who pulls this BS. I know they are lying, I know it but they are so insistent and when they say it in such a friendly way its even worse. Its clear I will have to do an extensive formal complaint and change my gp... while I'm trying to get pip. She also said "buy meal shakes". I even had one tell me to buy my meds when I'm exempt. I can't fxxkn afford it I'm unemployed and sick thanks for helping 🤦‍♀️ I'm so tired of all of it... thank you because that is exactly what I thought.

[x_emily_x in reply to Moon_maiden]

Would you mind telling me the process you went through to have these prescribed shakes? I dont care about the taste of anything they may give bc its really just for survival and not becoming more sick. Too many times I've gone through this 😕

[Moon_maiden in reply to x_emily_x]

I think the gastro did the dietician but GP can, I can’t quite remember. I said I wanted a referral to Gastro though, second one at a different hospital. Originally it was for SIBO testing but still under and waiting for the test with capsule camera.

Your GP is definitely giving BS, you don’t have to go private and they should do something. Makes me so cross when they say that crap. Are you diagnosed with anything like celiac? You can definitely get some foods on prescription if you are. Can you have someone with you when you speak to GP? on speaker if need be and make sure the GP knows it. You’ve grounds for a complaint as they aren’t helping at all. I’ve had GP do letters and forms before with no issues. Do you have online access to your medical records? This is important to see what’s in the consultations and what they are writing. If you have access this will give you info you need for PIP as well. Always write down worse case scenario and keep a copy of what you send in. Online access will give you hospital letters as well.

I can’t remember ever being turned down for any referral or letter, I’ve had five ops since 2020 and still chasing things up. Even scans during covid, got one the same day once after discovering the surgery hadn’t referred correctly.

[Moon_maiden]

I accused gastro of gaslighting me this year and got an appointment within a week after saying I’d complain to PALS 😂 they tried to give me an appointment three months down the line.

[x_emily_x in reply to Moon_maiden]

Woops keep replying to the wrong bit lol its there ⬇️ 😂

[x_emily_x]

I am just going to be a complete pain for them, I've been too kind and too patient because I grew up with 2 medical parents, army medic and matron pediatric nhs nurse. So I think you're right. And though I haven't wanted to, it can't go on like this. I will complain, complain, complain. I've already kept a record of everything I've ever sent in when requesting appointments so I will let them know that too. Thank you 💕

[Moon_maiden in reply to x_emily_x]

Let us know how you get on, here if you have any questions or you want a chat.

This condition is more debilitating than they give credit for. The cells are ‘similar’ to cancer but they still say it’s not cancer, it’s in the top twenty NHS most painful conditions and current treatment and research is being done with cancer drugs and they can’t (won’t) even classify the blessed disease! It’s definitely not a period only disease that’s for sure.

Stay strong 🙂

[x_emily_x in reply to Moon_maiden]

Wow I didnt know that. Thank you moon, you can chat to me anytime too 💛 xx