PIP for endometriosis

[P9LON]

Hi,

I was wondering if anyone on here claims PIP for endometriosis, and if so, how the process was in doing it?

[Jade2006]

would like to know this too

[Nicjane]

I have also been thinking about this. I might make an appointment for citizens advice this week.

[Otohime]

Hi. I actually applied for it last year and they offered to pay when I just found a good job to cover all costs plus. So I stupidly turned it down and now I regret it as I’m back not being able to work again… I still wasn’t fully acknowledging my illnesses and symptoms at that time then even the doctor gave me sick notes to say not able to work but didn’t sink in. I was in a bad way and I had an advisor to sort out many things and he was the one who helped me to apply for PIP. Well actually some other people did advise me to apply long before that but I just didn’t understand it all. I wish I did much earlier then me and my sons life would be better. It took about six months for them to offer the payment. So do it now. I had to apply again and currently waiting to receive the form. Definitely give a try because you never know. And have someone to help you, family, friend or advisor from citizens advice bureau. I hope this help.

[P9LON in reply to Otohime]

Thank you for your reply. I’m sorry that your circumstances changed and you’re having to start all over 😔 I’m like you, and have kind of been in denial over the condition for so so many years, but now I need to face facts that I actually need more help. I’ve not really understood much about the PIP and whether I’d be entitled to it, or should even think about applying….. I’ll call and go from there. Thanks again and look after yourself.

[Inonge1 in reply to Otohime]

Hi,Sorry you had to go through what you did.

I first applied for PIP in 2017 and they gave me zero points for everything!

My housing officer who had seen first hand what I was experiencing helped me escalate to Trubunal.

The Tribunal process is long winded but I had a face-to-face and was told it'd take a month for them to get back to me. That same afternoon, the clerk got in touch and told me the judge said to give me the award backdated to the day I applied.

My advice is to stick with it and get help filling the form. For my subsequent renewals I've used 'Benefits at work' , they've invaluable resources to help with your claim.

And also you do not need to be unemployed to get it,but show how the condition impacts your working and also ask your employer to make reasonable adjustments for you at work to support you.

[Moon_maiden]

Hi

It’s worth applying and checking out CAB website for info on filling it out.

I got it recently, I included Endometriosis but all my fit notes say chronic pain. You have to be really thoughtful on filling out the form in the way you answer the questions. The mobility one is hard, I get pain when I walk, I can walk, I don’t limp or anything but I get abdominal pain. I don’t do the cooking in general, someone else does, I have no appetite, left to my own devices I would hardly eat. It’s picking worse case scenario when you look at the questions. Write answers in rough first and take a copy of what you send back. Go into detail, include all the medical evidence you can and a list of medication. There is a question about medication but printing a copy off is good. If you don’t have app to access GP records, worth getting. Include all conditions and emphasis the chronic pain, I can’t remember if it becomes chronic after three or six months. PIP is all about not being able to do things, I’ve had a gardener a couple of times which has been helpful, getting a cleaner isn’t so easy.

The CAB is really helpful, I volunteer a couple of mornings, it’s about all I can sit for at one time.

This maybe more rambling 😂 take notes of what you can and can’t do over a few days whilst you wait for form.

I’m not an advisor but have experience with the form if I can help.

Give DWP a call and get the form, you can only try

[BunnyMad]

Whatever you do don't do it alone. Call citazens advice and ask them for help, or possibly your local council and see if they have a team who can help. Citazens advice will help you fill in the forms but as I found out only 2 days before tribunal won't actually go with you (though this seems to vary depending on where you are). I was told they'd be there right up until just before. They did do a written submission but how much notice was taken I don't know.

It's definitely worth trying but be prepared as it's not an easy or nice process.

Almost everyone will be denied initially. You can appeal this with a "mandatory reconsidertion". This has a good chance of being denied too. Very likely you'll need to go to the final stage which is tribunal where a judge, a 'disability specialist' and a 'doctor' will sit on a panel and decide. Note that the chances of the doctor being anything to do with endo or gynae are stupidly low. They can be any type of doctor.

The DWP may be there too and can also ask questions though they may also keep silent.

I don't want to scare you off because it's still worth doing, but this process is brutal.

It's been well over a year since my initial application and I only got my tribunal recently. Still waiting on the verdict but I'm certain I've lost.

I had a 2hr long interview that ran over time and it absolutely exhausted me. 5 days of 'recovery' just to get back to the level I was at beforehand. I just slept through 2 days. It was *brutal*. The doctor on the panel grilled me for most of it, refused to believe I could possibly be bleeding so much or so often (did explain it's due to the tablets I'm on; he didn't seem to notice). Kept coming up with stupid questions like "if you could magic the pain away would you have a normal life? Would you go out more?" - I mean, what?? How do I know what my life would be like without this disease, I've had it since my early teens! Kinda like asking someone born without legs if they'd be an olympic runner if they could magically grow legs. What kind of a dumb condescending question is that?!

He tried very hard to push me into holes and trap me. I was too exhausted to argue and explain. Every time I tried to explain he cut me off and said he'd rephrase the question or that it 'wasn't relevant'.

He wouldn't let me explain what endo was as he said he was familiar with it but the questions he asked led me to believe he only had a passing knowledge. Probably googled it briefly beforehand.

What I'm trying to say is you need to be mentally prepared that the process is grueling and whilst it's worth it if you get the outcome you frankly do deserve, it will be tough and you do need guidance. I have a tendency to play my symptoms down, it's in my nature. I hid this disease for so long from almost everyone. You cannot do that. You have to tell how it really is, at its worst. This is where most people, including me, go wrong.

The other thing to be prepared for is that you will likely get a very upsetting letter of decision from the DWP. This is normal and I was warned it would happen but I still wasn't as prepared as I thought for how upsetting it was. All of the "I've decided x doesn't affect your life" is incredibly upsetting for those of us with chronic illnesses like this that have stolen our life away for years. So much so I finally sought counselling for the first time in my life after getting that letter. They really tear you apart.

It's worth mentioning that the assessors (Capita, Atos etc) are literally told to fail you. There's been a lot of coverage on it in recent years but nothing is done. They have to fail the majority of people or they lose their job. They will be nice to your face and then say you can do things that you can't. They outright lie.

They also don't have to know anything about your disease. They can be anything like a nurse, a physiotherapist or a dentist. Something that may have no application to your disease whatsoever.

Go for it but get guidance and be prepared they are doing everything possible to stop as many people as possible. It's not just endo, I've known bedbound people and people missing limbs who are refused and have to go through the entire process up to tribunal. It's a broken system.

The more evidence you have the better too, letters from doctors etc. I had very little evidence as everything is paperless these days and I'm too timid to ask for letters to be written for me. I really should have.

[hannah11]

Hey. I'm unable to work due to my endo symptoms and have been claiming PIP successfully for a few years now.

As others have said, it is very useful to get help when filling out the forms. Your local disability organisation should be able to help you. They can advice you on how to word things to enable you to get the points you deserve. It really helps to fill out the form from the perceptive of your worst days. You want everything you claim to be backed up by evidence, so if you say you struggle to walk or eat make sure you've got proof from a doctor that shows this (letter from gyne or physio or GP etc) if you have those, you're sure to get the points.

Just go super slow when filling out the form. Keep a copy for your records. It can be painful to write about everything so make sure you do self care stuff as you work on this to keep your brain feeling ok.

Once you've submitted the form you might get called in for a meeting to discuss things with a healthcare professional. They will ask you questions about your mobility and abilities to carry out daily tasks like cooking and hygiene stuff. It can feel a bit personal but ultimately they are just trying to establish how much your illness affects your day to day.

I get called in for reviews every so often which is the same thing really. I request for all reviews to be done over the phone which is much easier than having to go in.

It is definitely achievable to receive PIP for endo. I wish you so much luck with it and if you have any further questions about any element I would be happy to help