Does anyone know if endometriosis is a re... - Endometriosis UK

Endometriosis UK

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Does anyone know if endometriosis is a registered disability?

Timothy31 profile image

Been having trouble at work due to needing time off, being rushed to hospital twice this year already, affecting my performance at work. Just wanna be a typical 18 year old! Instead im constantly in pain, asleep due to pain relief and depressed. whilst working my hardest which doesn't seem to be paying off. Taking over my life!

12 Replies

I'm really sorry to hear that you're having such a rough time of it. Have you talked to your doctor about managing the pain?

Timothy31 profile image
Timothy31 in reply to fhiosat

I was supposed to have a major clear put this month but put it off due to work and having such a bad op in march. But now its getting ridiculous :( im currently on cocodamal and naproxen x

I know the feeling. What's you job role? They should be putting in support for you at work. xx

Im currently a special needs play leader and im going to start being a teaching assistant in Sept. I would've thought people would be more understanding as its already in special needs and care but it doesnt seem to make much of a difference to them. So annoying!xx

Have you joined unison? they have given me great support and advise. What has your work said/done since you've been unwell? xxx

Am I supposed to? (Sorry, I know nothing about unions). My work have been kind of bleugh. They're making out that they knew nothing about my endo which they do, and I am apparently going to be called in for a meeting? I don't really know what to expect from my new job though! Xxx

Hey just wondering what unison is as although my work (managers) have been supportive in giving me time off and to recover from my lap, the actual company's policy is no sick pay - well you have to accrue enough days to get it. So basically I have had to go back to work sooner as if I miss anymore pay I won't be able to pay my rent and also now I'm back at work I don't think they really understand I have a long term condition and think the op has just sorted it all out. Can endo be registered as a disability then? How has unison helped you? I work as a copywriter though and is there any other advice you can give me? Thanks x

ap2014 profile image
ap2014 in reply to Faye_Craig1

Unison is one of the public service unions. I'm a member as I work in the NHS.


Disability Living Allowance is composed of 2 parts - an allowance for care received, and an allowance to help with mobility.

Unfortunately Endo is not a registered disability. I know this as I have applied for Disability Living Allowance (DLA) 3 times and been refused (I also have another problem which affects my mobility). On the refusal letter they stated that just because you have a condition, that does not mean that you are entitled to DLA. They require proof that you need care (i.e., a person who looks after you and helps you with dressing, eating etc.) in order to qualify for the care portion of DLA, or your condition means that you cannot walk for more than 50 meters with walking aids, in order to qualify for the mobility part of the allowance.

I believe that if you leave work, even for health reasons, you do not automatically qualify for incapacity allowance, and you have to wait for 6 months in order to claim Income Support. If you are sacked however, I believe that you can claim Income Support immediately. I say believe because my information is a few years old. It would be worth speaking with your local Citizen's Advice Bureaux, as they are neutral and very helpful.

I'm sorry this isn't good news. We require more support to manage this condition, especially as most women with endo have to reduce work hours though health not choice, and unfortunately many employers/colleagues without this condition are not very understanding. We also tend to give up after a while as our health is just too debilitating.

I wish you well.

ollie_86 profile image
ollie_86 in reply to Smilie

Hi I have endrometriosis and have been on disability for a number of years and I claim both parts although I do have other medical problems I didn't when I first claimed I was refused the first time I applied but then was given the benefit after that I think the benefit is given based on hoiw the medical condition affects you rather on the condition its self I wasn't aware they had a list of conditions that did and didn't accept endometriosis is a medical condition the benefit has now changed it is no longer disability living allowance and bear in ming that if your doctor gives you a sick note and says that you are not fit to work then you will be entitled to claim income support automatically and if you apply for other benefits and they grant them the money will be back dated from the time you send your application . I know how you feel I have been there my advice is don't give be persistent and find what you are entitled to don't be disheartened if you aren't accepted first time try again

Hope this helps and good luck

I agree with ollie. DLA which is now PIP don't give you the benefit on just a condition itself. It's down to how it affects you. As everyone reacts differently to each condition. I'm on incapacity which is now ESA, which I had to have a medical for, this is because I was too ill to work. DLA / PIP you can get while working or not working, as it's just meant to help you out. You don't need to have a carer to get it. It just depends how much your conditions affects your every day living and mobility. You don't have to get the car n mobility, you can just get one part. A lot of people are being sent for medicals n turned down, but you will have to fight for it. It's not that you don't deserve it, it's just there trying to cut back on the amount of people claiming. x

I have all these as well as polycystic ovaries and been out of work for 5 years due to pain

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