Endometriosis UK

PIP

Hi. I have applied and been refused Pip with no points at all!

Have been diagnosed from 2013 but told have probably had it since 11yrs old!

Has anyone applied for pip too?

31 Replies
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What is it that you suffer from.?

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Oh sorry! I have endometriosis and adenomyometritis (this is when the Endo is within the womb) ,depression, asthma, ,diabetes and plantar fasciitis.

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There was a post where someone said they were awarded it though not in full points. Perhaps try using the search feature here to find it?

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Thanks. I'll look for the posts.

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It’s mainly how it’s affected your illness.... as a lot of people don’t realise this... you can do an moanary recondiration, ignore the spelling and if no luck there then off to upper tribunal... then court is the last resort... BTW it will take forever to get it as I know my friends is going through this.... one of my friend said tribunal was utter hell horrible experience.....

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Thanks. Oh dear! More stress!

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I get it. The post youre looking for is mine. I have stage 4 deep infiltrating endometriosis of both ovaries/fallopians/bowel/bladder. Its aggressive and doesnt respond to any treatment. I also have reactional depression and joint issues. Mainly spinal/feet. I got 6 points after first assessment, then awarded lower rate pip after mandatory reconsideration. Been awarded for 2.5 years. Im still under BSGE consultant with 4 monthly check ups. Im 12 months post my last excision. I suffer chronic pelvic pain, severe constipation and chronic fatigue. Also bladder/bowel incontinence. If you want to know anything just inbox me xx

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Thank you so much for your reply. Gives me hope. I'm doing a mandatory reconsideration with support from my local housing office. Will keep posting.

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Like someone stated, dont go too much on your diagnoses. PIP is about how your diagnoses effects you! Theres plenty of help online and im glad youre getting help now with your local housing authority. But google will also make a good friend. Funny really, i got kicked off ESA at my first ever assessment, a week before my excision, got left homeless the works because they wouldnt let me sign on jobseekers cuz in the same week as being found fit for work, i waz found unfit for work. Then got PIP. Its a nightmare and a ridiculous system. If you dont get it, just keep applying xx

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Thanks. Would have thought that vulnerable people should be helped!

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They do offer it. I just applied myself, my GP backed my claim and so did my consultant. I wrote my mandatory reconsideration letter myself. But if you aint sure it really is best you get help with it all. It is a mine field, and anything you do say can be used against you, if you get it wrong. Xx

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Thank you

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Yep it's a bloody hard too, of your willing to fight then go for it as I got PIP luckily got it after so many people failing and infact my friend just been to tribunal and failed then waiting for another appealing stage

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My friend got guillian barr. Was really poorly. Was on high rate everything. She got better but was left with an autoimmune disease that attacks her nerves. When her first claim ran out she applied again. Got 6 points at assessment. Put in for reconsideration, got nowhere. Went to Tribunal and they took all 6 points off her! Its certainly brutal. Although im not lying about how poorly i am. Ive needed major surgery. Ive tried every treatment bar hysterectomy, before and after surgery. Endometriosis certainly can be a disability. My GP was all for signing me off work other day. Luckily with PIP i can survive part time. Which is a massive help. Xx

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The reason they dont go off diagnosis' though is because if they said "all those who have endometriosis can have pip" that would be like 1 in 10 women, if not higher. Thats why youve to prove how it effects you. Ie. By having a severe form of the disease, and that it impacts your life or likely to impact your life. The form of endo i have and probably you too has a 99% chance of being disabling. So to the government theres a 99% chance we aint lying about how it effects us. In my reconsideration letter after pointing out a few facts, i pointed that out. They peed me right off when they mentioned my financial situation. So i pointed out i was poor because i was ill, not ill because i was poor! It did the trick! Xx

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I got a disability for life and it is getting worst more bad days than good.... I brought my dad along and he's a fighter... Also I can't work cos of the disability either (chronic pains) as unsteadiness. I was on DLA for life, now 10 years.

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I have more bad days than good. I couldnt give up work though. I really enjoy having something to do! Id go mental staying home 24/7 and although work cripples me and a lot of the time im crippled at work, i need it in my life. My sis was on dla for life for schitzophrenia, got awarded pip for 6 years, she doesnt work and it does take a toll on her! I just couldnt do it. Without work id be like her, unable to leave the house! Xx

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Luckily I've found a passion in photography that keeps me going and keeps me motivated.... I did study to do graphics design and those times I founded that I got depressed and etc didn't like the course wished I stuck to photography

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Photography is a fab hobby. Both me and my sister love photography. Its really good you have a passion for sure. I looked after my disabled dad for 13 years. His disabilities left him stuck in self pity and unable to do much which resulted in suicide attempts and alcoholism. Being disabled is a very slippery slope, through no fault of ones own. I think thats why im holding on to work. I dont blame my dad, he never chose cancer like i never chose endometriosis, but being disabled does scare me because of how i watched his life unfold! Its good youve got focus! Xx

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Yeah i do get annoyed with myself and finally admit that I can't control it so yeah gotta admit having a disablity is like not nice to have, I do exercise saying that I'm healthy as according to the check up at the nurse, lots of people do judge and just have no clue on what's its like to have a disablity.... It's a hidden disability at times despite having drop attacks and self injuring myself which I do get so annoyed about so i would never wish that on anyone! I'm gonna pm you in abit

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I fully understand. I get the same. My partners family thought i was taking the p? I was lazy? I ended up homeless. On a 12 hour a week wage 😂 .. Even though they visited me in hospital. I had a catheter and abdominal drain in after major surgery. When i got awarded PIP i was like "stick that in your pipe and smoke it". 😂😂 .. People are ignorant, id take no notice. If they had to deal with what we deal with theyd cry. Hold head high. Inbox me anytime. Might take a while to reply as off to work in a min! But ill def speak to you later xx

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Ill tell you who are the most ignorant of people. The ones that get a sniffle and think theyre dying. I dont even think its ignorance, but jealousy. They know youre ill and suffering but dont know how you cope. My partner and his entire family are/was the most ignorant! Their the kind to run straight to Drs over a cold! Pfft. We've made up but i cant believe he allowed his family to brainwash him into believing them. He came Drs with me after i got an accute kidney infection and while i was out room ask the Dr what was wrong with me and the Dr explained how serous my disease is. And that for sure it impacts me daily. And he still listened to the poison dwarf of a mother! Xx

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I was adamant that I could hold a job... Nope not what I'm suffering with now, a friend of mine actually said you wouldn't be able to hold a job as he had an op and now I'm thinking of having it done just to ease it a tad... It won't cure me completely cos I was brain damaged by oxygen....

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I have deep infiltrating endo too,what treatment have you tried please? X

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I have tried everything. I have tried zoladex twice. Once with HRT once without. Combined pill back to back. Progesterone only pill and excision surgery. All of which has failed. Zoladex did nothing. Progesterone hospitalized me. Combined pill crippled me. And my endo returned within weeks of excision. I see my consultant in 2 weeks time to try Armatose Inhibiters i think theyre called. Its a breast cancer treatment not meant for pre-menopausal women, but its meant to be good at controlling endo. It doesnt come without side effects though. Its very similar to Zoladex! What have you tried so far? Xx

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Aromatase Inhibiters* .. Its stops endometriosis producing its own estrogen. Its not a cure i dont think but an effective treatment! I will likely need more surgery but because my endo returned so fast and had done quite a lot of damage, plus i had complications, my surgeon doesnt want to rush me back into theatre any time soon. He has promised me that the NHS will fund these drugs. Xx

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Hi I haven't had excision surgery as my pain is not bad at all even tho I have it deep everywhere,I'm on norethsterone progesterone only pill.xx

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Looking back i had symptoms for years and years. It did get quite severe to the point i would wake up in night at any time of the month in agony, throw up, pass out but by morning i would be ok again. I did that on/off for years. Until one day after a blunt trauma i got a massive pelvic infection from a ruptured endometrioma. Since then ive had little to no relief. At my first surgery, diagnostic, i only had left side endo. By time my second surgery, excision it was widespread. It goes up into my abdomen on left so i dont just have pelvic disease. Made my scars very awkward. Xx

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I haven't yet bit do know many cases only succeed on appeal so get advise from CAB and make sure you appeal. Unfortunately 0 is a standard score now ! Make sure you mention that Theresa May has said endo is a disability.

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As above its knowing what to say about what you can can't manage. But the system is apalling.No the toey government does not care about the vulnerable. And gas been taken to court over discrimination.

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I applied for it and I also got no points. I had it since I was 11 also. I can barely walk or anything due to the pain yet I got nothing. It’s very hard to get pip for endometriosis x

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