To expect DH to help pay for my diagnosis?

[Miserablelittlesoul]

I have numerous health conditions but the one that is affecting my life the most is (suspected endometriosis). I’ve had symptoms since I was young but never put 2 and 2 together not that I was aware of the condition anyway.

These past 6 months have been intense and I have pretty much lost my mobility. I’m no longer working anymore and I’ve been denied pip so I have no money coming in at all. We have maxed all the benefits we are entitled too.

We have spent all our savings now. All we have is our pokemon collection that is worth around 20k but we plan to hold on to this as the value keeps increasing.

DH has a 0% credit card with £15k on. He doesn’t want to use it and feels that it’s for emergencies only.

My life is so miserable I do nothing now I stay in the house everyday. I have about 10 good pain free days a month. I’m sad all the time! The house is always a mess and food shopping isn’t being done properly. So when it comes to dinner times it’s a distaster.

DH tries his best with everything but it doesn’t work I need my health back.

AIBU to think this is an emergency? I completely understand why he doesn’t want to. But I can’t wait 8 years for a diagnosis and treatment.

No savings left, 15 k credit card debt already and one income. I don't think you can afford private treatment if you want the truth. Surely you have had investigations on the nhs in the last 8 years. It's shocking if not.

Took me 16 years, finally got a diagnosis but…. no treatment.
Had to wait for the menopause for it to stop.
I didn’t pay for a private diagnosis via laparoscopy - but my dad paid for me to see a private consultant gynae who did lots of tests and scans.
These got sent to my GP and I finally got a laparoscopy.
However, the surgeon had a good look, saw advanced endo and didn’t remove any of it. Told me it only grows back, dear. I wanted to punch him in the face.
All I got offered were stronger painkillers in terms of treatment.

Where have you come up with the number of eight years?

What are you currently doing to help yourself?

Because women’s health issues are minimised and dismissed.
I spent several years, well 13 actually, with the GP telling me I had fibroids and that was why I was anaemic and suffered excruciating period pains. I then spent a further 5 years under gynae. It was only after 6 years under gynae I finally got my hysterectomy and was then told I had endometriosis.

I have stage 4 endometriosis and got diagnosed through the nhs within a year. It’s not always the worst case. If this is just for diagnostics there are also top private diagnostics in London and elsewhere that would cost hundreds, not thousands. Having treatment is more challenging but there are options once you have a diagnosis but just throwing money at it wouldn’t solve it safely.

we don’t have any debt.

How are you proposing to pay off credit card debt if you have no savings, no income, won't sell your Pokemon collection and are just covering costs?

Surely endo + crippling worry about debt would be worse than where you are?

I think your best bet is to make an absolute pain of yourself with your GP. Go back again and again and again until you get a referral for a specialist - that won't take 8 years. And take it from there. Your type and scope of endo might be treatable; it might not. You don't know what it is yet. Start with the referral. Getting into debt isn't going to make this better.

What have you tried so far ? I have very bad endometriosis and tricycling the pill has been very effective for me. Not everyone is the same but what has the gp suggested?

wow that is terrible! How is life for you now? I feel so trapped I don’t see a way out.

Can you go back to your gp and use this

https://www.somersetft.nhs.uk/?news=alice-bevan-aims-to-transform-endometriosis-diagnosis

Sorry I think I must have misunderstood that. Did you mean your dh has a credit card with a 15k spending limit on, but it hasn't been used?

It sounds like you are spending more than he earns if you've got through your savings. It would be a bad idea to go into debt that you can't repay.

What is your GP doing? Have they referred you for a laparoscopy or ultrasound? Have you tried hormone treatment/the pill?

My life is so miserable and our pokemon collection that is worth around 20k but we plan to hold on to this - these two things really don't make sense to me. You have the money to help yourself but you won't and instead want to go into debt. Bizarre choices.

Are you on an NHS waiting list and if so how long is it? If you are have you phoned to say you will take any cancellation at short notice (one way to get seen quicker).

If the NHS looks long maybe a compromise is to pay for private consultation with one that does private and NHS to discuss options which means you can swop back to NHS for the diagnostics or treatment.

OP hasn't 'come up with' that number, it's the publicised average wait time for women to be diagnosed and treated for endo. In fact the average is now 9 years 4 months

I had a private hysterectomy in Faro, Portugal in 2009. It cost (IIRC) about €4000. Obviously that will be more now but it's certainly worth investigating.

Other countries are available.

Lucky you?

Sorry, OP, but yabu. You can't afford private treatment - if you've already used up your savings just existing and paying off previous debt, how do you think you will be able to continue to "exist" and pay off the additional debt if you are no longer working?

Why were you refused PIP and have you appealed?

It is horrible being in pain but your DH is right that you can't spend money that you don't have.

Or if you're that desperate, just sell your pokemon collection now?

I can see the 8 years figure quoted in various articles but it's not clear to me whether this is 8 years from onset of symptoms, or from first GP contact or what. For me personally, once I was actually referred to Gynaecology by my GP everything happened quite quickly. But I had to see 3 different GP's to get that referral, so that was the bit that really delayed the diagnosis.
There are a lot of different steps that need to happen to rule out other conditions and confirm the presence of Endo, and we don't have enough info in the OP to know where she is in that process. We don't know what has already been tried. For example, many women with endo find that the Mirena Coil can make a significant difference to their symptoms so it could be worth trying that before maxing out credit cards when the end result may be that this is the suggested treatment anyway.
I also don't think it's clear what "waiting lists for diagnosis" means in the context of Endometriosis. Waiting list for an ultrasound scan which may or may not show endometriosis? Waiting list for exploratory laparoscopic surgery? I think that if someone already in a precarious financial position is planning to get themselves deeper into debt to pay for a service, they need to be really clear on what exactly it is they are paying for and what the impact on their quality of life will be.

What happens after the diagnosis? It sounds like you're pretty certian what the diagnosis is, how would having that formalised help?

Sell the Pokémon cards to fund it, yes you lose that investment but if it gets you a better quality of life it will be worth it and better than going into debt for it. Also have an initial consultation with a private one around 250, they can let you know how long their nhs wait list is etc and give you other options

Food shopping bring a disaster is not good - a very clean whole food plant based diet can massively help endometriosis

but spending on a credit card is not the sensible way to have living money. It’ll create more stress down the line

Pokémon collection is too valuable to get rid of it all and I don’t think hubby would do it anyway. My plan was to pay privately for the diagnosis to possibly speed it up with my gp.
Ive had the coil put in and tried the hormone pills. Gp prescribed me some pain medication and I’ve had swabs done and referred for an ultrasound so far. Everything is taking so long and my mental health is getting worse.

The info on the average length it takes a woman to get an actual ending diagnosis is available in seconds if you google it….

How much do you spend a month on pokemon?