I'm going to end up losing my job

[jobstuff24]

And I can't afford to

I have a new medical condition that is causing severe pain, as in 9/10, screaming/moaning/can't function pain
I'm on the max pain relief which isn't working
It's unpredictable so I could have pain once every few months or once every week
An operation will help but the waiting list isn't small and I'm waiting for hospital to have an MDT meeting

wtf do I do? I can't even go private as it needs two different types of surgeons
I'm exhausted, I'm sick of being in so much pain

Im so sorry OP, I really hope they get you sorted asap. Sorry if TMI but one thing that makes my pain sooo much worse is when I cant poop (which is frequently with the medication). Sure it wont make a substantial difference but when its impacting the bowl area make sure youre getting medication to help that too.

Have you applied for PIP? it sounds like it is affecting you so badly in your daily life that you could qualify for it.

Ask the healthcare professionals who support you to write supportive letters about your condition and send in any MRI, consultant reports you might have with your application.

I had endometriosis and adenomyosis and the pain was horrific. I had to wait for a year for a partial hysterectomy to deal with the adeno. In the last month before the operation, I was just lying in bed all day and the pain med did not even manage to lessen how bad I felt. I had to live on sick leave pay for about 3 months while I had the op and took time to recover.

Gosh, that sounds awful OP. You should join a union if you can.

You might be surprised how good your company are. They will know you are genuinely ill.

If I were you, I would call multiple times a day for a cancellation.

I needed an op on the NHS and it was an 18 month waiting list.

I called all day every time, sometimes twice a day. I got lucky as they had just had a cancellation for the next day and I went straight in for a pre op.

It was 2 months total wait.

I don't qualify because generally I'm fairly functioning person who can exercise, cook, run etc!

It's easing slightly now after I've taken more oramorph and the endo nurse has said to keep my doctors appointment this afternoon to discuss a higher dose

My flares (I count them as anything involving rolling around pain and not day to day pain) recently have been
9th Oct
2nd Nov
30th Nov
Then today

Worst is my actual period and 2 days after ovulation

There's no surgeons basically
The endometriosis centre has 3 surgeons but they're currently down to 1
It's a year waiting list to be seen for a first appointment
They're genuinely doing their absolute best so I'm trying not to be mad at them even though gynae care is a shower of shit in the NHS at the minute

She said once they've had the meeting next week they will know exactly what surgeons I need and when they can get me in which is better

I also have stage 4 endometriosis.
I don’t really have anything to add other than you’re not alone in having a really hard time with NHS. I’ve given up on having any kind of a life till menopause. My stepmum was similarly affected and lost her career completely so I’m trying weather the storm in a similar way. I’m currently trying to sell my house and move to a smaller one (my current house is already tiny). It’s completely outrageous that generations of women have their life blighted by the condition.

I feel like my GP isn't understanding the pain

It's like someone is twisting my ovary until it will burst and when the pain goes like it's doing now, it's like it's suddenly untwisted

I look like a balloon

When was your last scan? I blew up last summer and spent a few days crawling around on the floor and when I eventually got seen, an ovarian cyst had burst and there fluid in my abdomen. Things possibly have got worse since your last scan???
Or an ovarian torsion? Google the symptoms.

A couple of months ago when the pain was similar in a flare. The endometrioma size had increased but no twisting (they said it's unlikely to twist as my ovaries are so stuck with scar tissue)

They think the pain is the adenomyosis as well as the size of the endometrioma pulling on the ovary which is kind of what it feels like

Then after the pain goes I feel battered and exhausted and just want to sleep

Can people PLEASE stop with this "disability act" myth???

In the first place, the "disability act" was repealed in 2010! Secondly, the Equality Act does not offer the kind of protection that people keep on saying it does (and nor did the Disability Discrimination Act!).

What the law / guidance says is that an employer must make reasonable adjustments for a disability. In the case of a large employer such as this one, that would almost certainly include consideration of an additional number of sick days on top of any sickness absence targets - but such are likely to be far less generous that people may assume. Often no more than 2 - 5 days per annum. And certainly not an unlimited amount. People with disabilities are still subject to any sickness absence processes and very definitely can still be easily dismissed on sickness grounds provided that the employer cab show that they have made appropriate reasonable adjustments where that is possible, and have also followed the correct procedure. To go further than this is only at the discretion of the employer, and using such discretion can open a can of worms that many employers do not want to get in to - the Equality Act is not intended to be an open door to treating people with disabilities significantly more favourably than those without disabilities.

Unfortunately (and I really do sympathise - I suffered from both Endo and Adeno for many years; and quite seperately I am also disabled) I am not even convince the OP is in fact disabled in legal terms - the sporadic nature of the flares and her general discription of "good days" would suggest she may struggle to argue that she has as a physical impairment that has a substantial and long-term negative effect on someone's ability to do normal daily activities. Yes it is long term, yes she has daily or mostly daily "problems" but are these substantial enough to impact on her normal daily activities - probably not. And I say that from the position of having been in exactly the same place.

Since the OP says that she would be on SSP if she went off sick, then I will assume she isn't public sector (who are often more sympathetic and can be more flexible).

It would be helpful if the OP could explain how much actual sick days she has had, whether any formal sickness absence process has begun (and if she knows, the extent to which she has hit any trigger points), and any adjustments or flexibility which has been given. That may help people to provide more nuanced advice.

@EmmaMaria I'm disabled due to my other conditions, the main one being I'm immunocompromised with a rare blood disorder
Not public sector
Adjustments have been that I can have more sickness before I trigger but it's not been clear how much
Also that I can WFH mostly so I have access to pain relief and my heat pad
It was recommended I have regular breaks so 5 mins every hour but that isn't possible

I had a sickness meeting ages ago which was decided no outcome, refer to OH, then an occupational health meeting and nothing since

Sorry if that's jumbled, I've had a lot of meds!

Oh sweetheart. This is barbaric.

there WILL be private hospitals with access to the medics you need - almost certainly in London. I don’t generally support gofundme campaigns but this is one I would throw some money at.

I have a chronic illness and I manage it through flexible working. I use good days to power through as much work as possible, beyond my contracted hours, so on bad days I can stay in bed or do what I need to do.

It sounds like your job is pretty flexible, allowing you to WFH as much as you need, so could you do something similar?

Unfortunately not, it's set that I have to work the specific times we are open so effectively like a 9-5 office job where you can't work OT
If we aren't open there are no phone calls to take so nothing to do

I use annual leave for hospital and GP appointments, and sometimes I will ask for 30 mins to take meds and see if I can get it under control but if I can't then I'm off

As you can see I can type (it distracts me from the pain like candy crush!) but I'm not capable of speaking

I'm sorry, that sounds so hard. Are there any non-phone-based roles you could move to? I know that's not as simple as I make it sound.

Every sympathy. I had pain when I broke my back in 4 places. But I too like a pp immediately knew you were talking about endo issues, which are well known as being unsupported. I do wish you speedy resolution.

No that makes sense.

They really should have given you a specific number of days "extra", and having faiiled to do so is no doubt contributing to your worries. Perversely though, it is in your favour that they haven't. In a tribunal they would be looking for that "target" and if the employer has effectively just said "you can have more days" they can't then simply decide you have had "too many". So if you have exceeded the trigger (which is seems you have) and they have effectively left it there without anything else, let them until they decide otherwise. It is very unlikely that they could go to a dismissal until they have set some measureable target, especially since you are not on long term sickness. Don't poke the bear by asking for specifics, even if that might make you feel better informed!

Why isn't it possible to have regular breaks? I am assuming that you are on a telephone and the system allocates calls to you? In which case if these will help then you need to ask your manager how you can manage this - it may be hard to do but there are ways and means to get more breaks roughly every hour.

It would appear though, by discretion or forgetfullness, that they are letting the circumstances slide - I really wouldn't be worrying about your job until they stop doing that. It isn't as though you can do anything else to improve circumstances, so you aren't being unfair about it.

As far as the hospital, I understand - private hospitals are often unable to provide support for more complex conditions. They are mostly designed for quick turnaround profitable surgery, and those with the more complex ability often can't be accessed on the NHS system. One possible thing that may not have been thought of - is there anywhere in the NHS (another region) that has shorter lists? It is possible to be referred out of area if you would be willing to travel.

@EmmaMaria
There is two other centres fairly local but both have equally awful wait times - if I swap now I would have to go back to the start of waiting to see a consultant so back to a 12-18 month wait

Thankfully I should know more after Wed so I'm feeling more hopeful - the plan is to excise the endo, remove the endometriomas, unstick everything and fit a mirena at the same time for the adenomyosis

Sort of allocated calls yes, they come through constantly basically unless we aren't busy
They've offered to swap my 15 min breaks for 10 instead but that's not long enough to make a coffee, go to the toilet, nip outside/eat etc
I would have to log out every hour to take 5 mins which isn't possible due to business needs

This is dreadful, you should not need to wait so long if they cannot provide sufficient pain relief. I am so sorry you're going through this.

Have you applied for PIP? You have a disability, hopefully one that can be cured but it's there now. Your work would have a very hard time getting rid of you due to disability, if it did happen it'd take a long time then you would be unable to work due to disability and entitled to a fair few benefits.

I do hope work support you and you get the help you need. You must be going through hell 💐

Did you read the thread? Because all of that is covered already and the OP isn't entitled to "a fair few benefits". And with endo and adeno combined, there is often no pain medication available on the planet that will help a bad flare - I was on morphine patches that my GP described as usually being available only to people with end stage cancers, and they still didn't touch the edge of the pain.

Hmm - I am sure that business needs actually don't need you that much! But it probably isn't a hill to die on since, whether by design or not, they are being reasonably good on the sickness rates. Sometimes you just have to pick your battles.

I hope you get some answers on Wednesday.

I just can't relieve the pain, all the meds, heat pads etc etc, it's just a constant twisting waves of pain
I've broken both my ankles and had spinal surgery and nothing is like this and trying to explain to people how bad it is and that no it's not just when I'm on my period

We're almost twins! But I only broke one ankle 😁

Taking myself to bed for a bit
I've had all my pain relief on an empty stomach and now feeling sick and tired but in less pain