Financial support for Endo when it impacts your ability to work

[Cheesecrackers]

Hi, I'm 44 and have struggled with symptoms of endo for many years but especually bad since having the coil removed about 6 months ago. Chronic bleeding and quite random very heavy bleeds with exhaustion which make it difficult to function let alone work. I'm on the waiting list for hysterectomy as recent scans are showing up all sorts of issues. I wondered if anyone has experience of claiming financial support whilst unable to work and what the process looks like.. Is it difficult to prove inability to work with endo? I've also recently seperated so it's just me and my son at home (daughter at uni) although I'm hoping to arrange some spousal maintenance.

[Loveneige]

Hi,I'm afraid I can't really help on the financial side of things but you sound very much like me in your ability to continue working.

I am also a single parent and now have cut my hours down to part time as I just can't manage a physical job full time. I've now got to the stage of struggling with the energy levels to work and manages a home/child.

I believe it is classed as being disabled but also think its hard to get anything. I know there is PIP and ESA benefits but think you have to be very unable to function to get those.

Hope this helps a bit and you're not alone.

[Cheesecrackers in reply to Loveneige]

Thank you so much x

[Mrs_Potts]

Hi, I have been suffering like you and applied for PIP at one point for financial help when things were really bad and there was no chance of even leaving my bed/ bathroom. The woman assessing me reviewed my symptoms and opened with the question ‘so how are your periods’ completely misunderstanding the point that Endo is a condition that causes me issues every single day and not just on my period. You can imagine how the interview went and unsurprisingly I was turned down. I was so annoyed by how undermined I felt as one of the questions was about how many pads I get though. I stipulated that it was a huge amount but was then told as it wasn’t for incontinence it didn‘t count! I personally don’t see where an uncontrollable flow of menstrual blood differs from other body fluids, but that’s my rant! I think endometriosis UK was looking into government criteria as to why so many women are rejected for financial help as indeed, severe Endo is essentially a disability. It totally sucks and I’m so sorry to hear you’re struggling. You’re not alone. Stay strong! Xx

[Cheesecrackers in reply to Mrs_Potts]

That sounds horrendous, sorry to hear your experience. There's some serious issues with the criteria by the sounds of it thank you for your support x

[Summers88]

I have been advised many times to apply for PiP because of my endo, I just haven’t. But my best advice is, when filling out forms, and assessments, describe yourself on your worst days, the forms ask stupid questions like can you feed yourself? Can you prepare food? And if you answer yes to these questions, you won’t get points. So always answer questions based on your worst days. Hope that helps x

[Cheesecrackers in reply to Summers88]

Thanks so much yes it does x

[LawfulPanda]

To add with PIP, it can be helpful if you get an advocacy service to help fill out the forms, and if you get rejected, ask for a mandatory reconsideration. They reject a huge number of applications that are then approved on review.

Have a look at the full criteria, but things like fatigue and pain impacting activities count, as do fatigue and pain caused by doing the activity. (E.g. you might have the ability to prepare food, but pain means that you can’t stand in the kitchen half the time. Or you can push through and do it, but then your pain is so bad you can’t do anything else. )

[Cheesecrackers]

Thank you that's useful to know