Endometriosis UK
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So worried about having my esa medical ☹

hi back in July I had a hysterectomy I thought it would make me feel better but boy how wrong was I !! For three weeks after I had three infections' one after the other to cut a long story short I have been really poorly since the pains im getting are horrendous and my Dr now thinks I may have fibromyalgia so because I have been on the sick I have an assessment in two weeks and im so anxious about it endometriosis isn't classed as an disability I can barely get out of bed most mornings im constantly in pain and so so tired all the time I also have really bad diarrhoea most days I think I will fail as they won't take me seriously or believe me when I tell them how bad I am has anyone got any advice for me please many thanks

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Hi hun

I'm really sorry for what you've been and, are going through.

Ring the, assessment ppl up and tell them you want the assessment recording , take someone with you, also don't worry about endo not being a disability it causes you a disabiling life and that's what matters. Don't do anything different that day if your having a bad, day make sure they know remember their not your friends how ever nice they seem. They will judge you on how you talk how you walk sit stand etc you just show them how you are at home don't dress nice don't look well presented if you don't normally at home I know I don't when I'm in agony I go for months looking like rubbish. As long as you show them how you are at home when your ill they will get it. Make sure you get it recorded so they can hear the words and pain your in. If you need to cry do it if you need to shout because their questions are winding you up and you've been waiting for ages do it if your hot water bottle has gotten cold let them know you need to get home you want your bed. Don't be nice be yourself when your in pain 💗🤗😘 good luck hun xx

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hi thank you for the reply I have been yet again worrying all day about it to the point where I start panicking and I feel sick and start sweating so bad ☹ I know some of them are not nice I think it's going to take alot for me to convince them how bad I actually am im hoping my Dr will give me something stronger for the pain most mornings I can't get out of bed its like my legs just don't want to work i have to get my 14 year old daughter to help me go to the loo get dressed help me in the bath cook dinner for her and my youngest two children and literally by 10am im asleep and sleep til half 1ish I get up at 6 how the hell can I be tired after being awake for a few hours im in bed now ready to go to sleep every night im in bed by half 8 so im not staying up late I can't go out in fear of needing the loo urgently and obviously being in pain it hurts even when my kids hug me and that makes me feel so so bad ☹ sorry for going on I just think some people don't realise how much endometriosis affects women I don't even tell people what it is I just tell them to google it also since my op I have really bad anxiety and and depression but I always tell people im fine x

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Hun let them know all of this it's heartbreaking and it can cause such headache I feel real bad for you hun.

Don't stress too much get this info what you've told me and tell it them iv just got out the bath. You rest hun and I'll message you tomorrow. I'll try help you through this.💗🤗😘

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thank you very much i really appreciate your help I need as,much support and help as,possible I look forward to hearing from you tomorrow take care once again thank you xx

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Babe endometriosis is classed as disability i had my esa and pip assessments and they put it down as a disability also i have fibro so if you want to talk i am here xxxx

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hi thank you for the reply last time I went for an assessment for esa the woman didn't give me one point she said it's not classed as a disability i was so,angry with her i told her to look it up but she just ignored me and I fear that will be the case again in two weeks especially because I have had a hysterectomy a few months ago I thought I would be so much better but instead I'm getting worse I have to rely on my kids and my partner to do everything for me im just anxious about it ☹

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im the same as you just a few weeks ago i had my pip assessment and it took it out of me and i know i have another one coming up in may my best thing to say to you is do your assessment make sure you have someone with you tell them everything and if they dont listen thats fine because what i learnt some listen some dont if you dont already get cab involved or my council has money advice team who has helped me and if you neeed to appeal go through them also make sure you have docs letters and gynie letters every letter you can get to back you up also mention to them about the fibro how you just learnt you might have it maybe ask you doctor for a letter if they can im reply on my family alot too and i know its hard if you need to talk to anyone just pm me if you would like

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Yep endometriosis itself is not classed as a disability. It depends how much the illness debilitates you. I can understand why as I know people with Endo who have minimal symptoms, some have no symptoms and only find out once they have investigations for infertility. Your symptoms are what can be classed as disability so you need to let them know everything. Take notes of what you've listed above about your daughter having to take you to the loo etc, take someone with you and get them to make sure all your points are put across, if you need to get a cab there make sure they know - they award points on all these things. I was successfully awarded esa 2 years ago for Endo and ptsd/depression & anxiety unrelated to Endo. I know it's insanely stressful and upsetting. If you are struggling with anxiety as well please make sure your doctor mentions this in their letter.

As others have said, turn up looking like you would on a typical day, don't feel you have to massively push yourself to wash hair, put make up on etc. They need to see you how you look at home when suffering. Base all your answers on your worst days. I think that's the trouble with Endo and esa - they want to see a nice consistent debilitating illness with no fluctuation which is ridiculous. Take all your medication with you, hot water bottle if you need. Try to see it as for one day you're throwing your dignity out the window and allowing a stranger to see you at your worst. If the pain is making it difficult for you to sit during the assessment do tell them. If the cocktail of painkillers are making it difficult to concentrate tell them. It's the opposite of what we battle to do every day - trying to put a brave face on, live a life but for that one day it needs to be done.

I cried a hell of a lot during my assessment. My friend answered a lot of questions using our notes as I was in such a state. I'd had multiple bereavements, all family gone and Endo much worse than it had been for 20 years. I'd always managed to work full time until then, admittedly with constant pressure from employers as each month I was debilitated and in bed for 4 days. It then started spreading to a fortnight then every day and I was let go.

Good luck! Keep posting on here asking any questions you have xx

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hi sorry its taken me so long to get back to you not been too good today sounds like you haven't had it easy ☹ thank you so much for your advice im really hoping my Dr will do a letter for me on Monday if not I have no proof from any specialists just my discharge letter from the hospital I don't see my specialist until three days after my assessment im seeing a specialist on Wednesday as,my Dr thinks I may have fibromyalgia as,well all I have to take with me it my medication and what I tell them about my health I think they will see it as I had a hysterectomy so I should be better and I thought I would be as well but I have just been so so poorly 🤒 ever since its making me depressed and anxious 😩 all the time I can't go out in fear of having an accident because of Endo on my bowels and bladder but I have no proof I have it there I just know they won't take me seriously and I will fail 😢 xx

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Hi there, Angie. I think what's in your favour here is that you have 2 weeks before the assessment. I'm really pleased you've been able to post on here now as I've seen others post a day or 2 before the assessment in a total panic - maybe just becoming aware of the forum or maybe just not being able to cope with tackling it all.

Definitely speak to your doctor tomorrow about a letter to take to your assessment. Do you have a fairly good relationship with them? I ask as my main gp is pretty useless regarding Endo and adenomyosis but is very helpful regarding the depression and anxiety side. He wrote a full A4 page backing up what I was saying, added that the esa process was adding to my mental health issues and that in itself was exacerbating my physical pain. I honestly don't think I'd have been awarded esa if it wasn't for his letter. I think it's so important you get one. If for whatever reason your gp doesn't supply one please make another appointment to see a difffent gp.

You've maybe already researched preparing for esa assessment but this is quite useful: citizensadvice.org.uk/benef...

The timing of your next hospital appointment is unfortunate. Could you phone the hospital tomor/Tuesday and request a phone chat with the specialist? If there's any chance of them being able to bring forward your appointment that would be better but if not I would push for a phone consultation and tell them you really need a letter from them for you to take to the assessment. I think it's so important you get letters from the professionals you're dealing with to back up your esa statement.

I'm so sorry you've gone through a hysterectomy and you're still in such a bad way. I would make notes for you or a friend to tell the esa assessor that this was obviously a huge decision to make and you did it thinking you'd finally be much better and that it's devastated you physically and mentally that that is not the case.

Do push hard for letters from your gp and specialist. It sounds to be like what you've gone through is having a strong effect on your mental wellbeing. I think the mental health side awarded me more points but I was already on an antidepressant and diazepam. I'm not sure if your dr has already prescribed anything regarding your depression. I took all my meds with me - ibuprofen, high dose codeine, tramadol, anti-sickness drugs, diarrhoea pills, antidepressants and diazepam and the assessor noted them all down.

Feel free to message me directly if you like. If you think having a chat on the phone could help I can send you my number.

Take care, get all your points noted down and good luck with the gp tomorrow xx

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hi I hope you are well I have phoned my specialist who was also my surgeon when I had my op obviously I couldn't speak to him but I did speak to his secretary who told me that if it was possible she would ask him to do a letter for me but couldn't promise me anything its been a while since I saw my gp as its so hard to get an appointment at my surgery and I don't like to bother them sounds daft I know 😞 I have no idea what to say to him tomorrow as there are several things I would like him to do one is a sick note as mine runs out next Sunday two is the pain relief three how im feeling mentally and four a letter to take with me a while ago I had such bad pains in my back I made an urgent appointment to see a locum dr who gave me diazpam and co.codamol but only the diazpam helped a bit I think Dr will just think I want one thing off him I feel so bad telling him everything maybe you could message me privately on here if that's ok i will reply asap thank you so much for your help and support xx

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