I’m feeling absolutely hopeless, useless and pointless right now. Had the dreaded health assessment for Employment Support Allowance a few days ago and have been notified that I have been placed in the Work Related Activity group rather than the Support group. Not only does this mean that the DWP think I am fine and need to earn my benefit with tasks/interviews and get back to work, but also means they won’t pay me anything after this September as I will have been on contribution-based ESA for a year.
There’s no way I can hold down a job with my symptoms, not even part time. I had to give up my job because I couldn’t manage physically or mentally. I don’t understand what they think I might be capable of doing and who on Earth would employ me??
I have no life at the moment and don’t see that improving any time soon. I’m in daily pain, much worse on periods, have so much fatigue and brain fog that some days I can’t even follow a recipe. I’m stressed and depressed about being ill. My anxiety is high. I don’t go anywhere, as money is short and if I need to drive I can’t take all my painkillers. With bladder and bowel symptoms, I don’t want to stay out long anyway, and can rarely relax & enjoy myself. I can’t keep up with all the chores that need doing at home even though I’m stuck there all the time, so I feel horribly guilty as well.
I’m waiting to start chemical menopause injections, to see if that gives me some temporary relief. I don’t hold out much hope, because I have deep endo, scarring & adhesions (plus I have had no luck with hormones in the past & believe they masked/fed my endo). Another major operation is probably on the cards, but with how slowly things move it will probably be another couple of years before it gets done. I did try to tell the DWP about all of this, and explain that there’s no cure, and that even natural menopause doesn’t mean the end of endo, but obviously it means nothing to them.
I can hardly see the point in getting up in the morning.
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Purple_Badgers
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Hi, I get what you mean, it's really awful sometimes and incredibly isolating. I'm in a similar boat mentaly and wondered have you tried claiming PIP? Also I recently found out about recovery colleges, if that sounds like something that'd help you please look into if theres one in your area as it's something i'm looking into atm. I wish I could be more helpful. Feel free to reach out if you need to chat about anything. x
Thank you xxx PIP has been mentioned to me before, but I don’t think I’m disabled enough to qualify, specially now I’ve been assessed as able to work towards getting a job. Maybe I’ll apply sometime when I think I can handle it. Can’t really lose anything, I guess! Recovery colleges sound interesting- I’ll read up on them. Take care x
Hi l just read your post about ESA l just wonder if you cannot appeal there decision and put in a mandatory consideration outlining again all what you have described here..l think you can also appeal if they don’t change there mind with regards to the mandatory consideration I would advice to try and see citizen advice or a similar organisations as they are used to supporting people with benefit issues
In regards to PIP’s it not to do with how disabled you are it’s about how you complete daily task and how the condition limits your capability to complete your daily activity in a timely manor .
I totally understand the stress of living with a life limiting condition and then to be put through these distressful DWP assessments
Thank you xxx I’ve had a look at some benefits advice and see that you can request details of how they made the decision (I have no details at the moment), then request a reconsideration. I’m so tired of it all, but maybe I’ll be able to gather some strength from somewhere to appeal. I need to try and make them understand.
Hi. My daughter has been in the same position as you regarding endo. She has stage 4 and has had 4 operations up to now. Her latest surgery has been amazing. Her surgeon, plus bowel surgeon, and a robot, have improved her life considerably. She has gone from being in pain everyday to practically none. She has Depo injections every 10 weeks instead of 12 weekly, and it has really helped to keep the endo at bay. She had horrendous scarring from the first botched up surgery she had and he was unable to remove a lot of the endo. Her bowel was stuck and her ovary was completely stuck to the abdominal wall and you couldn't even see it. The surgeon she has now was horrified by the mess he left her in. Dealing with DWP is a nightmare and it causes all kinds of stresses. You must appeal against their decision but make sure you keep copies of everything you send them and chase them up if you don't hear anything. My other daughter's mandatory consideration sat on someone's desk for over a year! She didn't get any money for over a year which was horrendous. They eventually sorted it out and she got all the money backdated but it was fortunate that at that time I was in a position to be able to support her. I hope you get sorted soon and that your life improves.
Thank you xxx I’m so glad your daughter eventually got the right treatment and that’s she’s feeling a lot better, that’s brilliant news! My insides are about as messy as hers were, by the sound of it. I’ve only had the one operation so far - most of my adhesions/scars are from living 30 years without the right help.Also good to know that it’s worth persevering with DWP to get the benefits you deserve & are entitled to. I don’t have much fight in me right now, but hopefully there will be a day when I feel more motivated 👍
Dear purple badger. I resonate with all you say and feel for us all this way. The lack of understanding of what this disease,lack of knowledge and managing of symptoms, mental health and marginalisation around it all does have a very real impact which is not considered for us all.Pip and an esa appeal is a good idea. But I get that this alone is a lot of work and very distressing process also.
I would find a local charity to walk beside you with this and in the meantime attend your esa appointments as best or say you are too unwell to come , ask for your gp to support by way of sending a letter should esa start penalising. If you are unwell you cannot think to call up jobs… just keep reporting back to them how you are. I am on contribution based esa and I just say I’m not well enough to do this or that when I am asked to. Tell them you are also appealing when you can find support to help you- tell your gp.
I am on hrt now and it has helped a little and of menopause age also- yet I still get symptoms and have been waiting for a lap for over two years after not being heard and with no diagnosis for near 10 years. I kinda went through the worst of my symptoms in my 40s with no support and finally they found adenomyosis after a scan which helped me to stop pushing through which was causing me more harm. I await a lap incase endo is there too but am uncertain I will go ahead as this long wait time makes me doubt myself all the time!
Just wanted to send you some support to keep advocating as best for yourself within it all and apply for these benefits you deserve . Keep speaking up about your symptoms and fingers crossed you can get some pip … it’s got to be worth a try🤗 big squeeze x
Thank you xxx your support & your virtual hug are very much appreciated!When I’m feeling less overwhelmed by everything, hopefully I’ll be able to appeal the ESA decision and investigate PIP, maybe with some expert help as you suggest.
Maybe I can channel the collective anger at being left without diagnosis/fobbed off/ harmed with incorrect or incompetent treatment! It’s outrageous what so many of us have been put through… xxx
Reaching out. You are worth so much more than the lack of compassion and understanding you’re receiving. Don’t let them determine your beautiful self. It always is a struggle lifting oneself up in the face of others lack of comprehension and so tempting to take their world view as truth and do yourself down. Taking back our power in the circumstances feels a tough ask but that’s your wellbeing they are walking away from and that’s not right in anyones book.
Register an appeal for sure , GP support etc is the least you should do. As it’s so topical with womens health programmes on the politicians radar is it worth considering creating a bit of a news worthy story and going public with local news, media and your MP for awareness as to your specific case ? It’s sadly so common amongst endo sufferers that it would represent not just the personal battle as it’s a horror that neither you nor others should have to encounter. It may feel a tough ask in the place your at as you write but I know that what I struggle to do for my own benefit I can manage for others. Take back the power they have no right to make you feel so awful and your GP needs to know this too.
Thank you xxx It does take a special person to publicly complain, raise awareness, campaign etc and I’m so grateful for everyone who does this on behalf of all sufferers. Not something that I feel I could do, as I’m too much of a private person (except for sharing on here!) I did write to my MP a while ago as part of a general endo awareness campaign and got a cringey, generic response - YUCK.What I should do is have another in depth chat with my GP, as I could definitely do with a bit more support from there too. I need to be in a slightly better place physically & mentally, to be able to stand up for myself.
Of course you need all the support right now. Is there anyone who can help you with the admin and practical side of all of this it’s such a weight to bear alone.
My other half is an absolute sweetheart and will always do what he can to help in terms of emotional and practical support. However, as he’s dyslexic, paperwork is not his thing. Plus he’s been so stressed himself, working hard to keep the bills paid, doing loads at home too, he’s practically running the household single-handedly already. I hate to bother him with anything else.I’ll certainly follow the advice on here, might also use Citizens Advice or similar. My mum has a way with words and used to be in healthcare before retirement, so she could also be very useful
I dread to think how bad things would be if I didn’t have this forum, it’s probably been my most important source of info & support ❤️
I know exactly how you feel,what's the point,how can I explain this horrible thing that lives inside me and feeds on my pain and mental health! I just had my esa assessment and because I can't control my bowels and the strong meds I have to take just to make it through the day put me on the support group! Also have a look at chronic pain as a hidden disability but don't just give up get a mandatory appeal and be brutally honest about your bowels/bladder feel free to pm me if you need to take care
Thank you xxx I’m now wondering if I could have explained things better face to face. I filled in a form months ago with loads of intimate details, then had a really short telephone appointment with a young girl who I think had just started the job, as she kept pausing to speak to her supervisor. I also may have understated my mental health issues… I think I’ve been in denial about how stressed, depressed and anxious I have become. It’s pretty obvious to me now though, lol! I’ll go back to my GP for more help, then hopefully appeal ESA and try for PIP too.
I keep hearing of male partners saying to their long suffering women of either Drs or officials “ you must not be communicating properly for them not to be understanding “ Even my super supportive husband. When I’ve taken them with me then suddenly I get the treatment and progress I need. My comments don’t change in either circumstances. With the current support for womens’s health becoming the discussed issue , the private rant over the attitudes encountered has taken a turn. It’s not me the woman’s problem in what I say or don’t say it’s the receivers inability to listen and understand. Turning it back on ourselves, digging the knife in back on ourselves is a kind of gaslit madness. It’s time for your needs to be heard and for all of us to be kind to ourselves . Your situation is ghastly, unfair and plainly wrong. All the love and hugs.
I’m in a similar spot and can help with benefits if you DM me.
Sounds like you might be able to say due to chronic and severe pelvic pain you have depression and anxiety and bowel and bladder incontinence. It’s all about how you express the symptoms on the form as it’s scored.
I was made homelessness by my Endo, over Christmas and new year. The council housed me in a B&B as I was not well enough for a Hostel.
So 5 weeks with no money in benefit coming in during assessment period for Universal Credit, ESA.
Then: for ESA, Universal Credit 12 week assessment period….lasted 10 months on £74.20 per week. Paid every 2 weeks. The stress has been unbearable, I have no children and no helpful Parents/family. Foodbanks and charities helped me. I thought I was gonna die!
The Parliamentry debate in October MP’s voted to do more about PCOS and Endo. Where is this at Endometriosis.UK moderators? I mean, this is you remit, right?!
I watched it and it was discussed that Endo would be made a disability with DWP - am I correct? Anyone? @Lyne_support
Thank you so much xxx I’ve never had money worries quite like this before and definitely nowhere near what you have had to endure. Thank goodness you had the strength to survive all that. I really hope things are more secure for you now and you currently have a lot less stress!It’s great that there has been a lot of awareness raising going on, I have noticed news articles, tv programmes, debates, discussions lately, but yes I do wonder if any real progress is being made. There still seems to be a lot of ignorance and/or misinformation flying about. Imagine how much better things could be if endo was taken more seriously and was better understood by the DWP!
Endo affects us all in similar ways, it’s all very sad and frustrating. Honestly, I feel for you. It’s a shock financially and that’s valid no matter how it impacts. It still hurts.
I just want you to know your struggle is valid and real and scary. I hear you and I see you. If my experience can help others, that’s a bonus x
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