Endometriosis and PIP : Hi can anyone give... - Endometriosis UK

Endometriosis UK

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Endometriosis and PIP

SarahLouise12 profile image
SarahLouise12

Hi can anyone give an experience on being successful with applying for PIP for endometriosis and the anxiety that comes with the pain and hormones. 😊

26 Replies

I applied for pip just before Christmas and I had a telephone assessment a few weeks ago. Anyway i was awarded standard mobility rate but nothing for daily living allowance. I got 6 points for dla and you need 8 points. It's worth applying for. If you can get as much medical evidence as possible. You have to think about how you are on your worst day. The pain, fatigue incontinence depression etc. You got nothing to lose by applying for it. Good luck 🤞🤞🍀🍀

Thank you so much for your reply, I am going to apply and as you say, have nothing to lose! Thanks Sarah

plotments profile image
plotments in reply to angiecxx

Hi.......Just wondering have you appealed your PIP decision?I appealed against mine after only being awarded mobility, I've got the dla now as well. It is a long process to go through but you've done most of it, might be worth giving it a try, especially if you think they've overlooked something that would increase you score.

Take care

angiecxx profile image
angiecxx in reply to plotments

Hi i hope you are okay today. I've just sent off for a mandatory reconsideration just for dla. When I received the decision letter from pip there were some things which weren't correct and I had actually said the opposite of what the assessor said. I couldn't get any medical evidence from my surgery though due to the pandemic it would of taken a few weeks for a dr to do a letter. So i just got my daughter to write a letter stating what wasn't true in the decision letter. As i said i was awarded 6 points so whether they will award me more points for dlam i don't think they will but its worth a try. I'm glad you have been awarded dla as well. Was that just by going through a mandatory reconsideration? X

Bethleah profile image
Bethleah in reply to angiecxx

It’s unusual for mandatory reconsiderations to change the decision as it’s internal by the dwp. If they don’t contact citizens advice ASAP as they will help you appeal. On appeal over 75% (I think it’s higher than this) are awarded the benefit. It’s tough but worth doing.

angiecxx profile image
angiecxx in reply to Bethleah

Okay thank you. I spoke to my daughter about taking it to tribunal if they don't change their decision but I'm not sure i have the strength to go through it all. It's mentally and physically draining just applying for pip and esa. I will see what happens with the MR first and take it from there. 💛

Bethleah profile image
Bethleah in reply to angiecxx

I understand exactly what you are going through. It’s still worth talking to citizens a advice as they are free and impartial. They can tell you what they think, how it works and what to expect. They will write a submission for you which carries weight. 🤞

plotments profile image
plotments in reply to angiecxx

Morning .....I'm up and down at the moment, thanks for asking. Currently waiting for MRI before my MDT meeting....full hysterectomy, bowel endo...hey ho How have things been for you?

I didn't get it on mandatory recon'.....I doubt many people do but it's the next thing you have to do before you can appeal. It is worth appealing....not so much for the money, as your aware it's not a lot!!!! But more for the recognition of actually being ill, especially after going through the process. I found it was really getting to me having to constantly go over what I can't do......It felt like something positive in the end when I won.

That's good you've got help from your daughter telling them what they've overlooked. You should gain the extra points needed for dla. If you need help with appealing the CAB is the place to go to, but I managed mine on my own.

Fingers crossed you can get it all sorted out soon.

Take care xx

angiecxx profile image
angiecxx in reply to plotments

I'm not feeling too good today. I'm in so much pain with my back. It's horrendous what people have to go through with pip and esa l. They make you feel like a fraud and it's makes people feel much worse mentally and physically. As i said i was awarded 6 points for dla but i honestly don't think they will give me the extra points i need to get dla. I had a full hysterectomy as well nearly 4 years ago and that's when they found endo on my bowels and bladder. I was in surgery for 5 hours because my uterus was embedded with endo and it was stuck to the lining of my womb and stomach. I have been alot worse since the hysterectomy. I thought I'd be better and even though a hysterectomy doesn't cure endometriosis i didn't expect to be as bad as I am. 💛

plotments profile image
plotments in reply to angiecxx

So sorry to hear your having a bad day....we have that many it's rare for it to be a good one!!Totally agree with how they make you feel while applying for PIP and ESA. I've always worked up until now and have never had any benefits before the whole process is a battle and totally belittling.

It sounds like your endo was quite extensive, Did they manage to remove it all? Are you having any further treatments/ops?

🌻🌻🌻

angiecxx profile image
angiecxx in reply to plotments

The surgeon who was also my specialist removed about 65 percent of the endo but it spreads. He couldn't remove much from my bowels and bladder. I haven't seen my specialist for 3 years now. He said he's done all he can anx now I'm left basically living everyday in pain. I'm on strong painkillers but they don't do anything and when I've been really bad and I've gone to the doctors or hospital i either leave with nothing or just enough oramorph to get me through a day or two.

plotments profile image
plotments in reply to angiecxx

Totally understand the pain, I'm taking tramadol daily and top up with Oramorph when needed....which is getting more and more lately!!Sounds like you need to be seen by a specialist bowel/bladder surgeon. You shouldn't have to put up living with so much pain. They should have referred you on to bowel surgeon if you were still having symptoms. no wonder it's spread if he left so much behind.

There will be a bowel surgeon with Gynae when I have my op but just waiting to finalise the details....I need them to remove all the endo that they can at the same time.

Maybe if he has done all he can you should go and see another consultant who is capable of dealing with bowel/bladder endo.

Have you spoken with your GP?

angiecxx profile image
angiecxx in reply to plotments

It's really difficult at my surgery. The dr i use to see who was really nice and understanding left just over a year ago and obviously due to the pandemic it's very hard to get an appointment even a telephone consultation. I have been to our urgent care centre a few times but I've always been told there's nothing we can do but if it's really painful then go to a.n.e which I have done in the past. The last time was about a week before we went into the first lock down and i was given some oramorph but only one dose and the dr told me to go see my own Dr and obviously because of covid most days you couldn't even get through to the surgery so I just have put up with it. 😒.

plotments profile image
plotments in reply to angiecxx

Totally understand how difficult it is to get through to GP surgeries, took me three hours of constantly ringing the other day before I got through. But they are still there to help you. I was given oramorph by A&E before xmas and was told to get more from my GP, they didn't want to give me it but I insisted the pain is that bad I need it as a back up otherwise it would just be another trip to A&E. I'm sorry to hear that you feel you have to put up with it, but really you don't, you just need to find the strength to be more persistent with GP's. I'm not putting you down, I really do understand how hard it is to keep pushing for help when your body and mind are so tired with it's own battle. They can't use covid as an excuse anymore....all the reports on TV are saying things are under control now and the vaccination programme is a success. Now would be the time to insist on being dealt with.

I really wish I had a magic wand that I could wave to just get us all the treatment we deserve without having the fight.

Hope things improve for you soon, if you ever need a chat feel free to message me, I'm not up to much these days while waiting for op!!

Take care

angiecxx profile image
angiecxx in reply to plotments

Thank you my lovely. That's really kind of you. 💛. I will message you over the next few days. 😊.

Eraj profile image
Eraj in reply to plotments

I have applied in 2018 it was refused ,I am waiting for my tribunal date since then due to Covid its keep delaying,they asked further evidences in Feb I have provided ,still waiting to hear from them😔,I had a a excesion surgery in between in 2019,I dont know turbuinal still consider me or not. If your case in trbiunal and you win,are they paying you all previous amount or just Pip payment started from tribunal decission date?appreciate if u can reply.thanks🙂

plotments profile image
plotments in reply to Eraj

Hi....If you win the money is backdated to when you put original claim in if circumstances are still the same. It took me a full year from applying to getting appeal sorted.

Good luck

Eraj profile image
Eraj in reply to plotments

Thanks a million,I had a surgery ,symptoms are better now,but still having painful periods and depression.I dont know they consider or not😔.

angiecxx profile image
angiecxx in reply to Eraj

They will take your mental health into consideration. I was asked about my mental health and i just thought of the lowest point in my life and told them how bad it is

That’s good, because mine is affected, depression and anxiety comes with my pain, bloating and fatigue, thanks so much for your replies, like you said, it’s about being recognised as having this illness ,, can you get the blue badge or reduced rail fares with the lower rate? Thanks Sarah x

You must tell them that you suffer on a daily basis and that you have a chronic health condition which isn't curable and is getting worse. You can't walk more than 20 metres without having to stop due to the pain and exhaustion. You must tell them like it's your worst day. If you suffer from incontinence then tell them how bad it is. Do you have have help getting dressed, bathing etc? Can you prepare a meal if not then tell them. I can't do most things, my daughter does everything. She helps me bathe, get dressed, helps me to the loo. It's really degrading and humiliating but if you have to be honest with them. I'm not sure about the blue badge as i don't drive. I know you can get a rail card of you have a disability but i don't know how to go about getting one. X

Thanks so much for your open reply and sharing with me your experience xxx

That's okay. Good luck with pip. I hope you get the outcome you deserve. 💛

Thank you and you too 💝🤗

I’ve found this very interesting, a lady I work with asked me recently after returning to work after 4 months out (had excision surgery in December) which just wasn’t successful and I’m worse than I ever was so been totally unable to move around if I had applied for pip. I’ll be honest I had no idea what it was or that people that work could apply for it. In all honesty I’m not sure how I manage to get by on a day to day basis at work, but let’s face in we don’t have much choice! Not many people can afford to not work, I definitely can’t. But I cannot walk properly and haven’t been able to for 2 years now. I cannot walk for any longer than roughly 10 mins and that’s with a limp at a very slow pace as it’s just so painful. I don’t drive so have to rely on family to take me anywhere. I’m really fortunate to have my lovely mum who takes me to and from work and in all honesty if I ever want to go out anywhere if she’s not able to drop me I have to get a taxi. Then after work I’m done for the day I wouldn’t be able to be on my feet. My worst days I can just about get myself out of bed.

Would love to hear if anybody in a similar situation to myself has had any luck with pip? It would be a huge help as it takes a bit of pressure off knowing I have some extra income for travel.

Chloe x

Hi there I live in N Ireland and i am in receipt of PIP - however i was granted it a few years ago for spinal problems and now with an autoimmune illness PMR i get the middle rate of benefit I would apply anyway- u never know - anxiety is a condition that PIP branch DO look at granting payment to Good luck Molfosey

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