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.

for those interested, new book by Naga Munchetty who has adenomyosis and started her diagnosis journey as a teenager https://www.amazon.co.uk/Its-Probably-Nothing-Critical-Conversations/dp/0008686572

Do you expect to get more benefits with an endometriosis diagnosis? It isn't the thing that is stopping you working.

I have severe endometriosis and adenomyosis. It's caused two ectopic pregnancies, a ruptured ovary and infertility.

A mirena coil has got me to the point that it only has very minor impacts on my life.

I think you are searching for the wrong thing. Try getting a coil, addressing whatever else is preventing you working and living life and await an endometriosis assessment.

I don’t know if now there is more awareness but if you google (and read on this thread) the majority of women don’t have a diagnosis as quickly sadly. Mine took 13 years to be diagnosed for example. I’m sorry to hear about not being able to conceive naturally 😞. That must have been a shock.

Agree. I had my first lap with benenden. Its worth signing up, for minimal amount each month to receive a diagnosis.

I really wouldn’t. For starters you could burn through most of that just on consultation, scan, MRI, laparoscopy and in terms of your life it actually wouldn’t change anything. That would be no treatment, just a label. You’d still feel the same and you’d still be waiting for the NHS to treat you, if they decide to, or finding another £10k+ for treatment.

If you've lost your mobility or near enough how can you have been refused PIP? It asks if you can walk a certain number of metres and surely if you say no then they give you points for it?
I think maybe you should appeal.
Are you definitely not entitled to UC or ESA?

I hope things improve for you. X

Suggest you have a look at https://www.endometriosisclinic.co.uk/mr-peter-barton-smith

He saw DD on a private basis after she had had several years of treatment, none of which worked. The results for her have been life changing.

Endometriosis stopped me working, I nearly lost my job over it. How can you be at work when you are maxed out on morphine and screaming in pain? I was waiting for treatment but some days I was totally unable to work because I was wondering if it was possible to die from pain

I think you have to live through it to really understand. I don’t think I did fully grasp it as years went by and it got worse and worse. After reading these posts I see that it clearly manifests differently for everyone. Read several talking about key hole surgery and that was never an option for me. I hope yours is now managed better. 😞

edited for typos as usual 🤦‍♀️

I had keyhole but it ended up being 7 incisions, 8.5hrs and 2 surgeons

Same here

Whatever the operation it is never easy that’s for sure. I had to be open sadly. But thankfully I had already my 3 kids and didn’t want anymore so at least that was not a worry

If the Pokemon collection is worth £20k, you must have spent a huge amount on the cards! Stop wasting money on them and get some treatment and decent meals. You’ll feel better x

Perhaps other posters can advise - does the NHS still do the thing where you can ask to be referred to a particular consultant? (Or did they ever?!)

An ultrasound won't show anything unless it's in extremely severe stages. And with endo, the pain doesn't correspond to the amount of endo.

I spent 5 years with worsening symptoms but once a consultant with a specialist interest in endo saw me, it was plain sailing re. laproscopy, diagnosis, appropriate pain relief. (Had to get consultant to recommend pain relief to GP, bit trial an error but naproxen works for me now. Opiates worked short term but soon stopped being effective.)

I'm just unsure why it's taken this long with worsening symptoms and still not seeing a gynecologist (?) or being referred to a specialist. What's the GP actually been doing?

So sorry you are going through this. You absolutely need to get yourself back to the doctors and get a referral - this is not ok. You cannot live like this and neither should you be expected to. I had endo and you have to push so keep
doing it!!

I'd sell the Pokémon. There's no saying it will continue to rise in value, how will you feel if the market totally drops and they lose most of their value?
If you need £ and have something of value, sell it.

Some excellent advice here, particularly around paying for the private consultation to get you onto the NHS waiting list.

I have endometriosis, it’s horrific. I was lucky enough to have private cover through my work. I have been pain free for around 15 years now by having a laparoscopy where they got rid of as much as they could ( I have stage 4 so it’s kind of entwined like ivy around my bowel) and then going on cerazette ( for some reason only the branded tablet works for me) pill with no gaps. It took a few months of mild bleeding for the cerazette to kick in, but it’s definitely worth a try.

I don’t know why you’re getting such a hard time here OP, except just sell the damn Pokemon cards for an initial consultation. People wouldn’t ask a cancer sufferer what they intended to do about it if they got a cancer diagnosis and what difference it would make.

How are you going to pay the credit card off if you’ve got no money. Sell the bloody toy cards.

a friend of mine had a full hysterectomy to “cure” her endo (after her children) and never had anything recur after that. She just went on HRT and was happy as Larry.

You have to be so careful with that though as you need extra progesterone to balance the oestrogen or you feed the endo, and a hysterectomy doesn’t get rid of endo anyway

Sorry if this has been said, but I just want to clarify something.

If you are on a moratorium PMI policy, you can not get insurance for any condition that you have had or experience symptoms of, generally for 5 years. So you can't have symptoms, buy a policy and wait 6 months.

If you are fully medically underwritten you will have exclusions for ongoing health problems.

PMI is very important to me and I would not be without it. But it cannot help for ongoing situations unfortunately. Apologies if that has been pointed out in the thread, just didn't want to get your hopes up about the Benenden policy being able to resolve your condition.

When it comes to gynae in UK. You need to exaggerate your symptoms.

I say that as someone who had a suspected cancerous ovarian cyst at 20 and kept getting fobbed off. I went to A&E and exaggerated the pain. I got an ultrasound and had surgery a few hours later as I had a ruptured cyst and it had grown to 15cm.

One thing I can recommend is a private mri (you can get pelvic ones for around £300). If endometriosis is severe it should show on it. Last time I had a cyst, I had a private TV scan (cost around £90). Went to the gp following day and they referred me straight away.

It could also be a cyst though. I did have severe pain with one of them, used to bleed everytime after sex and spotting all through my cycle. Pain was awful and I couldn’t stand straight up.

GP will normally refer you urgently if you mention pain and abnormal bleeding. Even if you have to fib, it will get you the referral.

Not necessarily it isn't.

My DH was approved immediately, on first application. Enhanced rate too and no appeal needed.

I would call your GP surgery and check that the referral has gone in and ask where it has gone to. I would then call them and advise that you are happy to take cancellations and see if you can get seen more quickly that way. Once the ultrasound is done, ask them how long for the results and then follow up with your GP once you know they should have received them. Its hard work, but being persistent (but pleasant and kind) can help move you through the system more quickly.

I wouldn’t use money you don’t have on a ‘maybe’. My SIL has endo and got it removed but it came back quite badly. She managed hers with contraceptives and then ended up getting her womb removed (luckily already has 3 kids).

Would it be possible to get a part time WFH job whilst you wait on referrals? Every appointment you attend - turn up on crutches, cry, etc, it takes a lot to be taken seriously with this unfortunately.