I have been having investgations done for the past 12 months or so. For the last 3 - 4 years my periods have become so heavy and the pain so debillitating that i have gone from working 60 hours a week to 6-10 hours per week.
I went to my GP just over a year ago and presented my symptoms, she referred me for a scan, this showed thickened lining of womb, fibroids and cysts, nothing to worry about but they reffered me for a hysteroscopy so they could take a biopsy of the lining. The biopsy came back clear, but they more or less forced me to have a mirena coil and said this would sort out the problem......it hasn't. It's made it progressively worse. I am in far more pain than ever, my periods are all over the place a few days here and there but through keeping a diary it works out i am on my period 3 weeks out of 4. The pain is mainly left side low pelvic and in my back and legs. I struggle to walk at times, drive, lifting shopping bags, even a a basket of washing.
My last gynae appointment was not with the consultant, but with a doctor, last october, she said give the coil more time, eat more fibre and the pain will go away. She also said to lose some weight. I came away feeling totally misunderstood, i know i need to lose weight but weight isn't causing my problems, it may well be adding to my aches but it isn't the cause.
My GP sent me for an MRI, i had the results back recently and i have a large cyst on my left ovary, explains the pain and i know i'm not going mad at least (no more than usual) they do not know what type of cyst it is yet, i heard the words endometriomas and chocolate cysts. They suggested to wait 3 months and rescan to measure it, i think its the same cyst from last year that i was told not to worry about, but i don't think they have thought to compare the ultrasound pictures to the mri to see if its the same cyst.
Back to my question, is it worth me applying for ESA? I have no diagnosis yet. I am self employed mobile hairdresser, cutting back my hours to what i have it hardly seems worth me carrying running a car etc as i do not really make no money - i feel so bad that i cannot contribute financially like i used to, i have never claimed any benefits but some days it is so difficult to get to work, and being in such pain whilst working, my clients do not realise the pain i'm in, they just think i'm having a few period pains. I see so many others on ESA or DLA for less dibillitating conditions and wonder how they get it.
I've heard the questionaire is questions such as 'can you lift your arm above your head' 'can you use a pen' 'can you use a computer mouse' i can do all of those things even when i'm in pain, how can that be a fair assessment. I can also walk, sometimes at a good pace, other days i cannot walk at at all, or it's very slow and at an angle. I have tried to hold on to a little of my business, i don't want to give up, but as more clients drop off due to be let down because they simply do not understand it's becoming more and more difficult.
Hi, your nightmares with this remind me of mine when I was trying to get diagnosed. You need to ask for a laparoscopy to get a clear diagnosis, keep pushing for it. With me they kept telling me to take the pill and I point blank refused to take hormones (never been a fan of the pill) until I knew for sure what I would be taking was for the illness they suspected.
As for ESA, I claimed it. I am a student so had to have all this whilst I was doing my degree. Was impossible to work and what with all the extra expenses of being a mature student I had no choice as could barely make it in to uni never mind work.
The only thing is, when you actually go for the medical they will take you off ESA unless you are ill enough not to be able to bend to the floor, raise your knees to your chest and so on. I was amazed that they completely discounted all my doctors reports about the condition - it is a condition which is prone to flare ups so you get good and bad days. I couldn't see them on a bad day because I can't walk when I get them. Hit a brick wall. Anyways I managed to claim that with housing benefit for about a year. You are allowed to re-arrange the medical up to 3 times providing you have a doctors note (mad isn't it that they got them but still refused to believe I was ill!). When they take you off ESA you can appeal the decision and they have to reinstate it while you go through the appeal process (speak to the CAB).
Anyway, long story short I think you should apply for ESA and Housing Benefit, use the time you are on that to push for a diagnosis and get any treatment you need done to stabilise the illness and then you can return to work
It took me about 2 years to stabilise mine, was a rough ride with surgery, trial and error hormones and I still get poorly but nowhere near as bad or as often, so I tend to be ok with work most of the time.
I'm just wondering if you had a lot of problems trying to claim ESA?
I have been in the same situation as you, being a mature student at uni.
In Sept - Nov 2010, not knowing what was wrong with me and being like you not being able to walk half the time some days my boyfriend having to dress / undress me, I was really unwell and uni was sufffering half the time I couldnt go in and if I did go in I didnt have the energy to do any of my coursework so I reluctantly suspended from Uni in December(knowing that if I didnt I was bound to fail and would never get funding etc to repeat 2nd year and do final).
I applied for ESA and was told I was accepted but they needed more evidence / hadn't received stuff blah blah all the usual problems and I actually got my mp involved who liased with them over it, then after leaving me for 4 months with no money, telling me they were decision making, and not a chance I could work told me sorry you're a student so you can't make any claims. The stress made me a million times worse the pain was unbearable and I started getting depressed, my family and my boyfriend had to pay for everything (bearing in mind I was living in my own flat at the time and was not receiving student loan because I wasn't a student)
Just wondered if you were still a student when you managed to claim? If so did you have a diagnosis of endometriosis when you claimed?
I am just curious really because I had such a bad time and was thinking of doing a petition or something to try and stop them being able to do that to students who ill.
Yeah I had major issues claiming it, it took 9 months for it to get sorted but I did by going to the Student Union Advice Centre who liaised with the DWP on my behalf. There are special benefits rules for students that a lot of the staff in DWP don't know about so it helps getting an advice worker to send them a copy of these rules when getting them to assess your claim. As a student you are eligible for contribution based ESA (they just pay your NI) if you are ill with the same illness on more than one occasion every 12 weeks, so you need Drs notes for every attack of endo to get it up and running - extremely annoying but worth it because when they get it up and running you are entitled to Housing Benefit which has been a huge help for me through uni. Also apply to the Access to Learning Fund if you haven't already you are in a priority group because of your illness.
I am still in uni, been a bumpy ride haven't had summer breaks because had to split the academic year between the summer and term time because of how often I get poorly. Nearly finished now just doing my finals at the minute.
I know how rubbish this whole thing is, not just being ill but the financial side too. I actually lost my flat all the time it took them to get it up and running.
I hope you manage to get things sorted so that you can return to uni x
Thanks for replying .I've been back in uni since sept, had to go back as I'm 28 now and already been there 6 years with the year out and like you am doing my finals now.
I did all that I found all the rules on students and everything and was still refused it.
They just make it so hard for students and its unfair.
Hope all you're exams etc go well x
Hi, I too have had all your problems. I was off work for 6 months, my ssp stopped after this time. I claimed ESA but have been refused as I didn't get enough points in the stupid questions they asked. I've just had a hysterectomy. I'm getting no money. They also said I hadn't paid enough NI contributions. The whole system stinks. Im sorry I haven't been helpful. I wish you lots of luck. xxxx
If you have no income then you should apply again for ESA (income based) and go to appeal with it. You receive ESA for the first 13 weeks if you have a Fit Note from your GP and then complete an ESA50, the horrible questionnaire. You should NOT complete this yourself but go to CAB or your local wefare rights/advice centre. They would only pay ESA (contribution based) if you had worked previously and had paid enough NI contributions.
I hope you get some help Sarah.
x
thanks for coming back to me. i think if i claimed it, it would be contribution based as my husband is in full time work, but his wages stay in the bank and pay the bills so we don't see much of his money, my money we tended to live on but there isn't so much nowadays, some weeks i have only earnt £40 - 50, thank god for my son working and he gives some keep money but probably more than he should. I'm also not sure if i've paid enough NI contributions, there has been a couple of years gap for when i had my sons. I'm going to try and leave it a bit longer if i can before i start that fight.
But thank you, i was so tearful yesterday and came across this site, and reading through others stories, i finally know i'm not going mad, as that is how the hospital make me feel - they really do not know how much all this affects your life and those around you.
The ESA route is awful and the ESA questionnaire they send out prior to the medical assessment is awful. However having an advice worker helps as they can let you know how to complete the questionnaire. Unfortunately the decison maker is allowed not to agree with the opinion of your GP but be directly influenced by the "medical professional" who carries out the assessment. An advice worker can review all aspects of the assessment and questionnaire and fight for you at appeal. It takes the pressure and stress off you.
Anyone completing these ESA questionnaires should google Regulation 29 and 35 and include this with examples on the questionnaire.
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