Disability

[lisatf2004]

Can someone w tell me is endometriosis classed as a disability??

[RFox]

Not as far as I'm aware, I think there are campaigns to try and get it classed as a disability but I don't think it's happened yet.

[lisatf2004 in reply to RFox]

It Defo should be classed as a disability it floors me and for many ruined jobs, careers, relationship the list goes on. I hope it gets recognition it's a horrible illness x

[madtabby]

As RFox says its not classed as a disability at the moment but due to its massive impact on life & health there is a campaign to change this & have it put on the recognised list as this will also help with all the nedication we take just to kinda have a half life lol !

Here,s hoping eh !!!

[Alaine1]

Asthma is classed as a disability and there is no help with medication in terms of cost despite it being a life threatening disease. I still have to pay out for all of mine although for the last 10 years I've had a pre paid prescription card which saves me almost £200 a month at least and more when I have to have antibiotics and steroid tablets for flare ups

Endo can be classed as a disability based on the symptoms not the disease itself. You would have to have these symptoms most of the month and would relate mainly to fatigue and pain. Not everyone with these would have symptoms severe enough to be classed as a disability i.e. If you had pain for 5 days a month they could in theory say that leaves you most of the month pain free. It would also depend as well what other conditions you had that are known to occur with endo. IC is one which I also have and is well recognised hence the name endometriosis (& adenomyosis) evil twin. There are others although their associations are less strongly tighter to endo as they are seen in arthritis, and other chronic conditions. Hth

[lisatf2004 in reply to Alaine1]

I suffer from fatigue mostly every day doctors never once said this could be down to endometriosis!!!! I'm always having to get bloods took and they even mentioned fibromyalgia due to the fact I cannot pin point certain pains and always have numbness in my arms and legs n a general feeling of being unwell all the time I am only 30 and have a healthy diet etc. If I new all of this was symptoms of endometriosis then I would learn to Cope with it but it really has got me going off my head it's ruined my 7 year relationship also and my family are worried sick I'm constantly moaning and feeling down.

[Alaine1 in reply to lisatf2004]

It could be down to endometriosis although there are some that have it but aren't severely affected by fatigue. Or it could be from the possible fibromyalgia and non endo related

[Tor666 in reply to lisatf2004]

I know you have said they have done a lot of blood tests but have they ever tested your B12?

If so do you know what the results were? I have recently learned that when you are told your results are normal it doesn't necessary mean they are okay and you should always get a print out of your results.

Victoria x

[lisatf2004 in reply to Tor666]

Does b12 have something to do with endometriosis?? I've had it checked and they did say it was normal. reason I had it checked was because my sister got diagnosed with it at the start of the year along with pernicious anaemia, my results apparently were fine. If it states it's normal then how do I know it isn't normal? X

[Tor666 in reply to lisatf2004]

There is some evidence apparently that says that B12 deficiency along with thyroid issues are more common in women with endo. Plus it runs in families so if your sister has it you should keep an eye on your B12.

As for how are you to know if they tell you your results are 'normal' always get a print out of your test results.

I had my iron tested 2 weeks ago and it came back as normal, my actual result was 39 the range was (30-200) so yes i was within range so 'normal' but ideally i should be about 80-100- because one week later after a period i was down to 15.

If you get your results from your B12 blood test you can either pm me or there is a forum on here that i am also a member of for PA and B12 deficiency. Everyone on there is really helpful just like everyone on here.

Victoria Xx

[lisatf2004 in reply to Tor666]

Great thank you a might just call the doctor and ask if I can have the print out from my last test thanks for your help. X

[lisatf2004 in reply to Tor666]

My b12 was 315 that's all docs said but they have done a print out for me

[Tor666 in reply to lisatf2004]

Hello,

315 isn't wonderful but it wouldn't be low enough for them to do something about. At that level it could be contributing to how fatigued you are feeling.

It's the numbness in your arms and legs that is concerning as this can be caused by a deficiency in B12 and the knock on effect of nerve damage.

I really would post on the PAS forum they are a lot more knowledgeable than I am. I am having my own firght with my doctor. I had loading doses of B12 back in March but i'm back down to 290 again and rather than my doctors admitting that my constant migraines, numb hands and feet, memory loss etc is due to that, they have so far tested everything else including giving me an ECG and I am having a CT scan next week. I could cry, i'm so tired and my boss is so cross with them i had to stop him physically going down there and having a word with them himself!!

I know that sounds a bit odd but i am so lucky with my job, i work in a small company and we are more like a family. All my actual family live a couple of hundred miles away.

Victoria xx

[lisatf2004 in reply to Tor666]

I dont really know much about what b12 should be etc butbi know roughly about it as my sister just had her injections today for it. They said try won't test me jut now as was only tested last November. What is that website you said to post on? I have a neurology appointment next weekend about the numbness etc and was advised to mention about my lower back pain. X

[emmaibiza in reply to Alaine1]

Hi hun just read your reply. So I have been diagnosed with Endo, IC and ademyosis too so does this mean all my things could be classed as a disability? How do you go about it? I'm on the verge of losing my job due to constant pain and living on codiene, tramadol, morphine and loads other meds I take for the IC. If I can be classed as disabled this would give me more rights at work I guess.

[lisatf2004 in reply to emmaibiza]

I'm really not sure I've joined a few groups and a few on Twitter I'm also going to attend a local group as my doctors don't seem to know much I've had more help from people on this sight that anyone else Tbh!!!! Maybe citizens advice could help if you maybe entitled to PIP which I'd a disablity payment but not sure luv x

[Alaine1 in reply to emmaibiza]

I'm not too sure but I've messaged you x

[Alaine1]

*tied*

[fedupwithendo]

Nope, but there is a petition on change.org to get it recognised and ongoing campaigns. Will send link if I remember. It is a disability to me. I'd say it's been the last few years I've gone through jobs and pain and not knowing how I'm going to be and being unable to work because I'm a nurse on morphine and oramorph myself. Potential cause for life threatening errors. So essentially at the mo I've lost my career too. Ibknow it impacts people differently but it should be a recognised in stages or categories. Some people many never get into a category where they can't work and thats great, but those like me who can't are losing out on one household income and how do you live? Borrow has been my answer and it shouldn't have had to be. I am slightly bitter lol. I would love nothing more than to get out of bed every day pain free, fatigue free and have a positive outlook on life In general. They need to start accepting a big connection with depression and endo and chronic fatigue and endo. Hopefully in the future it will change. I can't imagine it's something that would be abused by sufferers and as sometimes symptoms change it could be reviewed every year etc

It would just have been nice to have some financial help at this time especially if like me, your 2year old son has a chronic illness and your partner is a carer for them. I must stop ranting now. Sorry for the essay!

[lisatf2004 in reply to fedupwithendo]

It's fine lol I know this all too well I'm just about to qualify in hairdressing which I love and I have many clients and it's a struggle to get up most days I've suffered with depression over the Years and I Defo think it's all connected it makes sense I'm generally a happy go lucky person but cannot handle feeling like this it's a great struggle as all sufferers will know and it's not self inflicted it's not caused initially by weight lifestyle etc I'm healthy as are thousands whom suffer now I might not have kids as have struggled for three years to conceive but we've split up now, also was told when I had lap that my tubes were all clear and that no reason why in the next 5 years I cannot conceive yet a friend of mine had a second lap this year and her endo is twice ad bad since last year so it's given me false hope to be honest

[fedupwithendo in reply to lisatf2004]

Oh hun, I know its really awful to be in a situation. Especially when you have split up with your partner. I was with my ex when I found out and we split up- he was of a different culture and his mom said that she would never forgive us if we had a baby out of wedlock. I think I had a lucky escape to be honest. He was very much governed by his mom and I think I would have been the same.

I then feel like you that you feel like it was your only chance but try to not think of the worst until you have found out how much yours has progressed. Mine was on my ovaries so I'm not sure what thy will say after lap on monday but at least I will know.

Take care hunny xx

[KML22]

Under UK law:

"You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities."

Individual conditions are rarely classified as disabilities, individual people have to go through the process of 'proving' through medical reports that their condition has a substantial, long term impairment. So technically, endo isn't outright classed as a disability, but you could still qualify for disability benefits/support in a variety of settings if you are assessed as being substantially impaired. For example, I get personal independence payment (the new version of DLA) and disability arrangements at my university due to endo.

There's a lot of confusion about this - it's worrying that people don't know they're entitled to support regardless of the official status of endo.

[ked79]

I know that has recently been acknowledged as a disability in America. It should be with the amount of time people have off

[Hidden]

Just thought I'd add my comments/experience. I have been classed as disabled by my employer (under the Equality Act) as occupational health determined that on an average, my daily experience of the disease/condition meets that of the Act. I also have restricted mobility and have been given a blue badge by the local authority and I'm in the processing of applying for Personal Independence Payment (PIP). However, as someone who worked within employment law for several years (albeit some time ago now) it is not always the disease which makes you disabled but how it affects you daily (or on average). It may not be - as with endo - every single day but the vast majority - so if on average say you have pain two thirds of a month or have the disease impact significantly for the same period of time, then it is likely you will be covered.

It is the same for even the most common of other conditions such as, for example, chronic fatigue syndrome, crohns disease, etc. and even cancer (though cancer itself is recognised as a disability in its own right) - different people are affected differently and at different times throughout their condition - I was certainly not disabled or even mildly affected for a few years after my hysterectomy but since 2012 it has unfortunately deteriorated and between 1987 to 2004 it varied with some good months and some bad...

The best way forward is to keep a diary and/or pain matrix over a few months and ask for occupational health referrals to aid in your assessment as to whether you're covered or not. I hope this helps. Send me a PM for more specific individual advice if required.

Regards

[Hollie90]

Some work places ask whether you have a "disability or long term medical condition that effects your day to day life".

Mine does, they know about my endo and adeno and I've been through occupational health etc. But because they are aware it's a lot easier now for nowme to ask my boss for extra time or when I get jabbed with hormones she lets me come and go as I need to (as I'm a wreck for a few days!)

Might be worth just double checking your work disability definitions or contact HR see if there's extra help x