To apply for PIP for endometriosis?

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Made a post about this before. Gynae thinks it’s pretty certain this is what’s causing my issues and they’re arranging surgery to diagnose/treat it.

Because of it, I currently can’t work full time. I’m in pain a lot and when it’s severe, I can’t stand up or even get out of bed. Even tramadol won’t remove the pain and it knocks me out. All pain drugs make me feel sleepy. I can’t live my life because of it. Twisting too much or moving too quickly is agonising.

Would I be stupid to apply for PIP because of it?

Sorry to hear you’re in so much pain

If it means you’re not able to work, you need to apply for ESA (Employment and Support Allowance).

That is, unless you are currently employed and on sick leave? In which case you might be getting sick pay?

PIP is not an out of work benefit - you may be eligible but your condition must have affected you for the last 3 months and be likely to affect you for the next 9 months as well (so 1 year in total). You will need medical evidence confirming it. So if you are hoping to get treatment soon and hoping that treatment will be successful (fingers crossed!) then PIP would not be appropriate.

Those rules don’t apply to ESA, you are eligible for as long as you are not able to work. It does also depend on whether you have made any NI contributions and/or whether you have any other sources of income (eg a partner who is working).

Here's the current PIP criteria, if you've not already seen it:

www.citizensadvice.org.uk/Global/Migrated_Documents/adviceguide/pip-9-table-of-activities-descriptors-and-points.pdf

I’m currently studying but previously I tried full time work and it got in the way (need at least 3 days off when it’s my period).

I’ve had the condition since I was 14, but it’s only now being diagnosed. Hopefully it will get better but I don’t know yet whether it will.

Pip is to help with things you can’t do ie getting on and off the loo without help, prepping food etc for the care side and mobility is dependant on how far you can walk, regularly without assistance or stopping.
As said above ESA might be better.

You can certainly try. I was diagnosed with endometriosis in 2004, been on very high doses of morphine for over 10 years. Since been diagnosed with ME and fibromyalgia. Had to stop working in 2011. My DH and I now have a company that i work for (very minimally, when I can).

Absolutely no chance of me getting PIP. If you look at the criteria and what gives you points, chronic pain and fatigue are miraculously barley considered at all. Can I work 50 or 100 or 200 meters? Sure, if I absolutely have to. It’s what happens after that that’s the problem.

Given that many people I know with severe disabilities like cerebral palsy have had their PIP refused after having a lifetime award of DLA, I’d say you’d struggle. I do know a few endo sufferers who are in receipt but they usually have other illnesses in addition. And although you don’t need a diagnosis to get it, it certainly helps so you may want to wait until you have more documentation if you can.

Sorry to be so negative - this fobern

Sorry, phone went mad.
This government have really gone after disabled people. My son has a very rare illness which requires constant monitoring and extra care and his DLA was refused (although I’m now reapplying).

If you do apply make sure you get some advice on completing the forms correctly.

What’s the course (further/higher education) and is it full or part time? (Nb some courses are classed as full time even if you don’t have full time hours in class/lectures.)

Here is information about PIP eligibility:
www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/before-claiming/check-you-are-eligible/

Do you need help with personal care (eg washing, dressing, cooking etc) and/or getting around? Do you need that help all the time or just when you have your period?

It’s not looking likely tbh but if you want to check you could try doing the online PIP self test.

Thank you. It’s part time further education. I was doing a degree but had to stop studying it because the pain and constant fatigue was hindering me. I’m hoping to eventually go back though.

It’s mid cycle pain (day 13-16) and when I’ve got my period. It’s sometimes disabling and I can’t do anything for myself but on other days, the pain is bad but I’m able to look after myself and my dc.

It looks like it’s unlikely, then.

I have it on my bowel. You have my sympathies

tea thank you. You too it’s horrible, has caused me much pain over nearly 10 years now

“There are rules about fluctuating conditions. For a descriptor to apply, it must be satisfied on over 50 per cent of days in a one year period.”
From www.hertfordshire.gov.uk/media-library/documents/adult-social-services/money-advice-factsheets/personal-independence-payment.pdf (page 5)

I have this too and the amount of time I had to take off work was awful. Luckily I had an amazing HR director who was very sympathetic, not all employees are. These days, despite being infertile (due to endo destroying my ovaries) I take the contraceptive pill continually so no periods and no pain. It’s been amazing. I think endometriosis should be considered a disability and not just because of the pain it can cause but also the blood loss. Here were days I couldn’t leave the house because I couldn’t keep the blood contained. Just because it doesn’t affect you every single day doesn’t mean it doesn’t effect your life and work.

MrsPeacock

So sorry to hear about that. I’ve had four miscarriages and I think it’s related to this. It’s very distressing.

I agree. Just because I look okay and have good days doesn't mean I’m not awfully impacted when it’s bad.

Luckily I don’t have heavy blood loss, mine is just pain.

IMHO you should apply for benefits you think you might be entitled to, unless you're rich enough that you don't need the money.

Whether you'll get it is up to the companies doing the assessments. PIP isn't awarded for disabilities as such, it's awarded for the impact of disabilities on your life. Basically it's to help pay for the extra costs you have because of your disability that an able-bodied person wouldn't have to pay. As mentioned most things have to affect you on more than half of days to 'count'.

As an example, I had to take two taxis today to see the doctor as I physically couldn’t walk more than a few meters (have recently developed vertigo as a fun add on symptom!). That’s an additional cost I wouldn’t have if I could have just walked / taken a bus. This is precisely what PIP should take into account but the quality of the assessments is utterly shocking.

If you do apply, make sure you specify that you cannot do certain tasks repeatedly and reliably since that’s what they claim is important. Eg. I may be able to walk 100 metres today but then I wouldn’t be able to repeat it, and there’s a good chance I wouldn’t be able to do it tomorrow, plus I would then be unable to cook, have a shower etc.

It shouldn’t just be about whether you can do an individual task once in isolation, but that’s often not how they tackle it, which is why so many refusals are overturned at appeal.

I also love how they tell people they’re fit to work yet have no advice on finding an employer who’d be happy with you having up to half the month off sick every month and being completely unpredictable and unreliable in your job performance!

Pain and fatigue are considered for PIP. To be able to considers to be able to complete the various descriptors you should be able to do them safely, reliably, repeatedly and to a reasonable standard. If something takes you twice as long as a "normal" person then you should be considered not able to complete the descriptor, for example. Another example is that if you can prepare a meal, but can only make one in a day because then you would be unable to make another meal because you were too exhausted, you should be considered unable to prepare a meal.
As another poster has said variable conditions are also considered in that the descriptor has to apply to you 50% of the time.
Your biggest issue is that DWP may not consider that your condition will last a further 9 months due to your expected op.
I would claim ESA and put in a claim for PIP. that will protect your date of claim. Go to Citizens Advice and ask for help completing the form. See what happens!

It’s difficult because endo is not curable but some women do have massive improvement after one surgery. Others don’t. So it’s hard to say how you’ll feel after the surgery if they do find and treat endo. Have they definitely said they’ll treat anything they find at the same time? Sadly at most hospitals they’ll do a diagnostic lap first and then schedule another for treatment, which is not good but I think it’s down to fitting in as many as they can.

tammy The criteria for PIP and DLA aren't that you can't do something once, but that you can't do it Safely, Repeatedly, Reliably, and in a Reasonable Time. So if you could say run out of a burning building but then collapse and have to stay in bed for days, that doesn't count. Or if you can technically do all the parts of cooking a meal but can't stand or even sit for long enough to do them all together.

From what you've said I've no idea if you'd manage to qualify, but it's possible. Start gathering your evidence and writing up lists of what's been tried, all the medication you've had, and drafting answers to the PIP2 form (if you can't find online I can send you the questions), as once you call to request the form you only have six weeks to write about 50 pages on all the things you can't do, which is both hard work and depressing. Took me 10 years before a friend made me finish the application.

Tammy yes they’ve told me they’ll remove it and any adhesions.

"It’s mid cycle pain (day 13-16) and when I’ve got my period. It’s sometimes disabling and I can’t do anything for myself but on other days, the pain is bad but I’m able to look after myself and my dc."

There are a couple of things to clear up about PIP. Firstly, you don't have to be 'getting' care to be 'needing' care. So being able to look after yourself and your DC, as in doing it because you have no choice, is not a barrier to demonstrating that you meet the criteria for PIP. You can need high rate care but not be receiving it.

Also, mental health conditions and invisible disabilities are catered for in PIP just as much as physical ones, as long as the person filling out the form knows how to go about it. For example 'can stand and walk 50 metres' may be failed by a person with severe colitis, because they need to rush to the toilet with a moment's notice and have to have a toilet within very close reach.

However, I think you're going to run into two problems:

1. The 50% rule for fluctuating conditions. You say that you are in pain for 3 days mid-cycle and during your period. If your period is 5-7 days, that's 10 days per month. ⅓ of a month, not ½, and you also say the pain is debilitating enough to be disabling for only some of that ⅓ of the month.

1. Longevity - if you expect treatment to be given that would send you into remission or cure, then you don't reasonably expect it to continue beyond 9 months from the date of claim.

Lougle thank you. That’s very helpful.

The issues I have is even on “good” days, I’m afraid to go very far without DP or DM in case I have sudden pain (sometimes there is no warning). I don’t drive and I get frightened I will be stranded with DC.

I do also have severe depression, partially as a result of this condition. Perhaps I should apply for it as a result of both?

Here are some questions to ask your doctor about Endometriosis:

• What causes it ?
• How will looking at it and scraping it help me get better ?
• What can I do to stop it recurring ?
• Do I have too much Estrogen or other hormones in my body ?
• Could my illness be caused by things that I eat, or don't eat ?
• What can I change about my diet and lifestyle to help my body repair itself ?

You may find this very surprising, but what if your Endometriosis is caused by things that you eat, or don't eat ?

Search online for "anti-inflammatory diet"
Here is an example: Vitamonk - Anti Inflammation Food Guide

This and the suggestions below may help you to reduce your pain

Maybe search for 10 local Nutritional Therapists who have had success advising about Endometriosis before choosing which one you would like to work with

• in the UK search for "BANT"

Here are 3 well-proven natural ways to reduce the Inflammation that causes the pain of Endometriosis

• Increase your Vitamin D
• Increase your Omega-3
• Reduce your Omega-6

Search for more about Endometriosis here:

• Vitamin D Wiki - Search for Endometriosis
• Authority Nutrition - Optimise Omega-6/3 Ratio
• Chris Kresser - How much Omega-3 ?
• Dr Axe 15 - Omega-3 Foods
• GreenVits - Blog: What to Do About Inflammation ?
• ExpertOmega3 - Studies: Inflammation

Some people have reported that eating specific foods like meat or dairy gives them an instant flare-up

Do you know of foods that make your Endometriosis worse and those that help ?

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Absolutely no chance of me getting PIP. If you look at the criteria and what gives you points, chronic pain and fatigue are miraculously barley considered at all. Can I work 50 or 100 or 200 meters? Sure, if I absolutely have to. It’s what happens after that that’s the problem

It's 20m for the walking criteria.

I had no idea what 20m looked like so I measured it from my front door. Then a friend and I walked it, it took her 26seconds and me 3 minutes. But then I couldn't walk back on my own. So the answer was yes I can walk 20m but only if the place I was going to a)was no more than 20m away and b)if there was somewhere to sit down at the end of it.

They also took the chronic pain and fatigue into account. I didn't supply medical evidence beyond giving them my Drs name but I filled in the spaces on the form for each answer making it absolutely clear that pain and fatigue played a huge part in my life. It was my first time claiming any benefits and they awarded me standard living and higher mobility. After all the stories I had read I was very surprised.

OP you have nothing to lose by applying. They can only say yes or no. If your condition seriously impacts your life then I would absolutely apply.

I don’t eat dairy very often and I only eat white meat. I’ll look into it though.