If you can’t work due to health problems but don’t get PIP what do you do??

[Endometriosisproblems]

I don’t understand the UC system for this - if you don’t get PIP can you still get LCWRA?

I can’t work due to severe gynae issues and although I could get a GP letter and have seen a consultant/ had some surgeries I’m now discharged as all the other treatments are only suitable if my family is complete and it isn’t (plan is another baby if that’s even possible then hysterectomy). So basically I have to get re referred when ready for hysterectomy

Can my GP just keep issuing notes is that the only way ?

I do realise how big a decision this is but not because I had to have a hysterectomy. But because my body "failed" me in other ways at a much younger age. Please think before you speak in these terms

I would never ever expect to be evaluated and be rejected, then expect payment to prioritise a baby I couldn't afford no matter how desperate and I know what desperate is to have a child.

That's awful. I hear you. I had a neurology consult 2.5 years ago after a wait of I don't remember how long. I had an MRI scan over 2 years ago and have been waiting for further tests since. Condition has worsened considerably and I'm just left in limbo.

I hope things move on for you soon x

But you are trying to conceive whilst admitting you are already struggling financially and asking how your family will get funding help? Yes, I get that you wanted a certain version of your family (I did also), but you have children already, surely your focus would be on giving them the best life you can? I can't believe that you would get enough temporary government hand outs to make it a good experience for you and you existing family?

Absolutely this, please don't think that a hysterectomy is a guaranteed answer to your problems. People said the same to me before my hysterectomy (including the pain consultant I was seeing) but I was so desperate to get better I had the surgery, my health hasn't been the same since.
Please try all other options first and please if you do take prostap or zoladex stick to the six month limit (not three years that I had which really messed me up).
There are a lot of women out there who have hysterectomies and end up with fibromyalgia and I wouldn't wish it on anyone.
I had 4 surgeries before my hysterectomy and prostap injections and also tried the coil but I still wish I had learned to manage the pain and gone on the pill, at least there was some respite from it for two weeks a month, it was nothing compared to the pain I have now and my quality of life is non existent.
I am not saying this to scare you, just please please consider and try all options first.
If you do have surgery make sure it is excision at a well established Endo centre not just your local hospital.
I too wanted another child but it wasn't to be, it was difficult but I also met women who couldn't have any children at all so I count myself very lucky.
Please do a lot of research and I wish you luck, hopefully your story will be completely different to mine but think carefully xx

This. You should not be bringing another baby into the world if you can’t afford it. Tax payers already have a heavy burden.

There were people who thought I was selfish for wanting another child at the time but it really wasn't for me, I was concerned about my other child being an only child and how they would manage in the future without sibling support through losing a parent etc
I wasn't concerned about money because I thought I would go back to work after the hysterectomy but it didn't work out like that. Think carefully how you would manage financially if one of you can't work.
In the end I think only having once child worked out for the best for us

Mumsnet is not the place to post to receive advice on things like this. You’re better off posting on a UC support group on FB

Wouldn’t you be better to get re referred now and put on the waiting list. You can still try for a baby during the time you are on waiting list. I’m just thinking rhat if the wait on waiting list is several years as some other posters have said the if you wait 18 months before going on the list it’s going to be nearer 5 years before you have op. If you are on waiting list for 2 to 3 years you can still try for a baby throughout that time and come off it if you get pregnant

I’m really sorry you are suffering. I have exactly the same as you do. However my condition is managed really well by my GP and I work full time. I’ll be honest, I’d love not to. I’d advise you to find a different GP who can help you too.

I honestly wouldn’t have another child. If you are as ill as you say you are it’ll have a massive impact on the child you have already.

Gawd, treatment for endo hasnt moved on at all has it?

I was being booked in for a hysterectomy in my mid 30's with no children, but thank fully the Mirena was invented. But even then, although the consultant prescribed it, the trust wouldnt pay, nor would my GP. Luckily the female partner in the practice took pity and prescribed, I had to go to Boots, it had to be ordered in, then collect it and go back to the hospital consultant for insertion

Like a previous poster, constant bleeding, flooding, and pain. I spent a lot of time on the loo and a lot of money on san pro

I chose not to have children come the end, once the Mirena took effect my life changed and no way on earth was I going back

I had my last one removed there just before my 60th birthday

@Endometriosisproblems If your partner is working its very unlikely you will get UC. You can get fit notes from the GP and will get ESA of £90. PiP is notoriously difficult to claim, its a Personal independence Payment, which means you have to show that you need constant help, you need to be prompted to eat, take meds, you need aids to help with living tasks, you cant perform tasks etc etc etc

Sometimes you need to put your health first and perhaps the job you are doing now isnt suitable anymore and maybe look at doing something else if your husbands income alone is leaving things tight. Due to different health issues, its what I did. Left my permanent role within the NHS and went on the Bank - a zero hour contract. If I was well I would ring in looking work - and there was always work - and if I wasnt, I didnt

OP, your family is complete.

Bottom line is, you’re not in a position to have another baby. Can you even carry a pregnancy?
The discussion about benefits aside, if you’re that ill that you’re essentially incapacitated then you shouldn’t even be considering having a baby you’re clearly not able to look after.

i also think that some posters on here would be very surprised to know how difficult it is to claim sickness benefits or PIP. It is not easy at all, you need a lot of medical evidence especially for PIP, consultants letters, gp letters OT reports, proof of medication, proof of what you have done to try to improve your situation eg surgeries, meds, pain clinic, pain management courses etc proof of seeing an OT, what adaptations you have made to your house, detailed diaries of what you can and can't do everyday including intimate questions about how you wash your body, which parts and how often etc and how you put your underwear on! What clothes you wear, how often you can go out, where you can go, how you can do that, how many meters you can walk, why you can't walk further, how often you can walk. If you can make toast once a day they say you can cook all of your own meals so don't need help with that etc
Even then people are usually turned down and need to appeal. Nearly 80% of appeals find the claimant as being entitled even though they were turned down. That's if you can find the energy to fill in all the forms, get all the info together, go through the awful assessment where you are believed to by lying, write a whole report for your appeal, attend the appeal and convince them you are telling the truth. They hope you will give up or be too ill or intimidated to do it.
PIP is not just handed out to anyone who asks as some people seem to believe, you have to have real difficulties with washing, dressing, cooking, mobility, using the loo etc to qualify

My DH has had a stroke and is no longer able to work due to cognitive damage. Physically he does not qualify for PIP, basically because he can use a microwave and wipe his own arse he’s not disabled enough by the stroke but that’s a whole different thread.
As someone who suffered stage 4 endo from early 20s with the resulting internal damage, I now have very little feeling in my bladder due to scarring, massive amount of adhesions which mean a hysterectomy is not really an option unless absolutely necessary ( cancer would be the only reason they would remove it).
Endo is debilitating but not impossible to live with. I had a business to run and developed coping mechanisms. I was lucky that my consultant gave me alternative forms of painkillers ( suppositories) that meant I could get quicker pain relief. Most of my attacks were at night so although exhausted I could still make it into work. Compared to my DH’s situation the worst stage of my endo journey bears no comparison to my DH’s current condition. 75% of the time I could function, the other 25% I was juggling pain control and blood loss. At no point did I lose any cognitive function so whether I was in pain or not I could struggle through.

I think for your own sake I would get a move on with completing your family then sort out the hysterectomy.
The longer you leave it the less likely you are to maintain your fertility and the risk of miscarriage increases. Endometriosis also significantly increases your risk of ovarian and endometrial cancer so again the sooner you get rid of everything the easier life will be and you lower the risk of future problems.

I’m working, I’d love more children but I can’t afford it.

OP already had a child/children. If she can’t afford another without benefits then maybe that’s a sign another child isn’t a great idea.

I also agree with others about not being able to work but able to raise a baby???

Having my baby has been a million times harder and full on than work.

Me too, lots of nastiness on here and comments that show they haven't read anything since they're talking about you being long term disabled and unable to work when it's just a short term issue and you need support for a bit to get through this. This calculator is supposed to be good OP. I'm sorry for what you're going through and the bashing you're getting on here. Had a laugh at the if you cant care for a child you can't work, I care for 3 kids with SEN and can't work because of my own health. Most people don't have a clue what its like being sick long term, i wish i could work, I don't know anyone with a disabling chronic illness who enjoys being on benefits and no one, even someone who did want to just scrounge benefits, would chose to be going through what i am to avoid working.
https://www.entitledto.co.uk/benefits-calculator/Intro/Home?cid=00e110f5-5a2e-46d2-a603-6047706b40f0

I agree with an earlier poster. The Mirena coil was a lifesaver. I had one fitted after DS was born and never looked back. My GP was happy to replace it earlier than normal, I found that I started to get that old familiar cramping after 4 yrs, and after being pain free I was not prepared to wait until the 5 yrs was up.
Like you I needed iron infusions towards the end of pregnancy because I was very anemic and a high risk if I haemorrhaged.
I you are not TTC have a coil fitted as it will help to preserve fertility.

Well done for staying so calm in your replies, OP. You have had some horrible replies on here. You have been dealt a rough hand and seem to be trying to give it a good go. I wish you all the best in the future and have my fingers crossed for a second baby for you.

What disgusting comments on this thread towards the OP how unhappy and bitter you all must be . From what I can gather she isn't even on benefits as partner works full time, wants to have another child and then get back to work. Wish I hadn't read this thread and it's very depressing just how vile people can be especially from behind their keyboard.

Other people can support you to look after a baby, you can also build routines that enable you to manage your health around a baby. I can’t think of single job where you can take someone else along to do the job for you or dictate to an employer how/when your going to work.

Or they don’t go to uni???

She’s not choosing having a child over working. She is too unwell to work. If you had a disability you’d fully understand why it is possible to have a child but not to work. She would claim the benefits regardless whether she had another child or not.

I have endo.

Regardless of your plans for the future, there are things that can help you now.

For start, proper painkillers will help with the pain. Is your GP prescribing you painkillers?

If you are ttc then hormonal contraception is out of the park.

Personally I found that my endo symptoms went completely during pregnancy (no periods) but came back afterwards. The NHS is notoriously reluctant to perform hysterectomies so unless you can afford one privately (and I'm presuming not if you are asking about benefits) you may fund it hard to get one.

I had injections and then the implant. They stopped the bleeding but by then I had do deposits on my bowels etc and I had an operation that used lasers to burn them off.

In terms of benefits - PIP is hard to get. You'll need a lot of evidence.

If you have been working until recently then you may be eligible for contributions based ESA (employment and support allowance). There's at least two levels of this but if you are entitled to it it's a years worth of payments. If they find you incapable of work then it can be higher payments for longer although I will warn you chronic pain on its own is unlikely to qualify.

This is a very generalised judgement and categorically untrue. But I’m guessing you don’t have a disability and experience of trying to work with one and therefore aren’t qualified to answer the OP’s question?

Speaking from experience the inflexibility and lack of support in the workplace is one of the biggest barriers to disabled people being able to work. Working and having a baby are two totally
different scenarios, anyone who automatically thinks if you can’t work you can’t parent is completely ignorant.