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.

Even I'd you get diagnosed, there aren't always treatments options available. How are you goinfg to pay back this credit card if you are broke already and can't work? What do you actually think going private will do? Same treatments are available although they'll be quicker. But depending where endo is growing, we will it may not be removable. I think he's being sensible. I have private health care but I've seen the bills for my apps and they are eye watering

I went to PALS as my appointment kept getting cancelled. Well, my dad did
he took this video of me (after paracetamol, naproxen, morphine, codeine) and basically said how can you leave someone like this for a year and sent it into them

gynae were telling me if I was vocalising pain to go to a&e, a&e were offering me no further pain relief so I just went round and round in circles

this was a fairly standard flare up when I couldn’t work. they removed 6 cysts (biggest 15cm), found my bowel folded in half and then removed endo from everywhere and unstuck all my organs except my appendix which was too covered to save

https://youtube.com/shorts/lRBgp5EQqKA?si=iwJnawyxTCnpkMVb

Nope. The market for that kind of thing at the moment is incredible. It's not the time to sell. You obviously don't understand it!

You have no money coming in at all? Aren’t you claiming benefits?

This may or may not be helpful but I dramatically improved my endo with dietary changes. I was already plant based but gave up gluten and alcohol too and the difference was immense. I also started following an autoimmune protocol from this doctor: https://www.amazon.co.uk/Goodbye-Autoimmune-Brooke-Goldner/dp/1729813909

It's been 13 years now since I've had it mostly under control.

A major study found 45% of participants who stopped eating gluten reported reduced endo pain. Another study observed that 75% of participants had a significant decrease in pain after 12 months on a gluten-free diet.

www.theguardian.com/society/2025/apr/05/major-endometriosis-study-reveals-impact-of-gluten-coffee-dairy-and-alcohol

So maybe it could work for you. Good luck.

The surgery is a little pointless as it grows back in a year or so. So you need to repeat it regularly. I find cutting out eggs/dairy and red meat helps manage my symptoms tremendously.

look at your diet, seriously.

Get on the mini pill or Mirena coil. The mini pill has meant that I can work full time (still in pain but not as bad). Before that I was in agony. I also have pmdd. Even if you get a diagnosis via ultrasound, there isn’t a cure for adenomyosis and endometriosis. You need to try some hormones even without a diagnosis. I know several women with these two conditions and we all work as we take the hormones and pain meds.

I'm confused as to why you would never have suspected endometriosis previously - have you never investigated your symptoms yourself?

I was the classic eight year diagnosis - except that was because they wouldn't do the diagnostic surgery (the only way to properly diagnose) until I was 21, tried many many things before then and since. Five laparoscopic surgeries later I had a hysterectomy aged 39, still there. There is no cure, and actually doing the surgery can make it worse as endo loves scar tissue

I think painful and heavy periods are just normalised, even though they’re not normal
I thought pain going down my thighs was usual and needing painkillers every day of my period. But it wasn’t that bad until I turned 38 and then it hit. The endo must have been there all along and then it stuck so much together

I asked my GP when I was 28 if I could have endo, she shrugged and said “well they can’t do anything for it anyway” so I never asked again

Absolutely not true. The ratio is about 50:50.

You need to research whether paying privately will get you faster diagnosis and treatment than continuing with the NHS.

It's a condition that has always been passed off as other conditions (IBS, IC, PCOS) because doctors didn't fully understand it and didn't have the data to show that it was far more common than they thought. Plus the only way to diagnose is it invasive, hence they try and rule out other stuff first.

I would do some thorough research on specialists (I'd hazard a guess there aren't that many) as you don't want to spend a lot of money if it isn't going to get you anywhere.

Have you tried the whole "right to choose" with the NHS?

Kinda irrelevant but have you had the cards graded? If they're worth around 20k that's only after grading and if you can find a serious buyer. I'm curious which cards/how many you have for it to be worth that much.

I sympathise. I had endometriosis. Now in my early 60s with 2 fistulas, 1 lost kidney and several other issues. In my day endometriosis was not even a thing. Please invest in get help. Don't let it ruin the rest of your body. You use the Pokémon money because the alternative is awful. Sending love

This is not true for everyone. But agree that a healthy diet is important and helps manage it but not enough in all cases

As someone with endo, I've very surprised by your post.

13 years before surgery, 12 before any medical professional even took me seriously.

I would have done anything to make it stop and you are relucant to sell pokemon cards! That's mind blowing to me.

Surgery changed my life. It gave me one.
I know I'm one of the lucky ones. I'm not cured but instead of being crippled 10-15 days a month, I have manageable pain (with painkillers) and only 3-4 really bad flare ups a year.

I know there's no guarantees but I'm absolutely baffled that pokeman cards (or anything else) matter more than trying everything possible to ease the pain.

But how would you pay it back and when? Even a diagnosis is not a cure, any treatment could involve several procedures and recovery time, so you may not be working for some time to come. Fwiw an initial consultation can cost from £120, so it would be worth asking first before you decide you need 15k. You might be able to self refer or need a letter from gp. If you chose to see a consultant who also practices at an nhs hospital you may be able to be transferred there for scans and treatment or sometimes your gp can refer you to a private hospital funded by nhs.

OP, I’ve had shares that I knew would increase in value that I’ve had to sell because something came up.

If you are desperate for private medical treatment, then in your position, you need to sell some of those cards to pay for it, not get yourselves into debt that you cannot afford to repay.

I had endo from my first ever period. No one took me seriously, gps fobbed me off.

I eventually had a laparoscopy about 15 years later which took some away but wasn’t a complete cure. I struggled through with painkillers for the next 10 years.

My periods started to become less frequent and I was diagnosed as early peri menopausal. Advised to consider ivf if I wanted children. I miraculously became pregnant without help and had my baby. I never had another period and never suffered with endo again. I’m sad that we weren’t able to have another child, but oh the relief not to have a life dominated by pain.

OP, if I were you I’d be returning regularly to gp. Ask for help in diagnosis and interim pain relief. Try different painkillers and ask for referrals for any holistic treatments. Look at what you can do with your diet. Tweaks can help a little.

i sympathise OP. Endo is so under diagnosed, misunderstood and dismissed.

PIP is absolutely not "always denied on the first try" I'm a decision maker.

Look up sophie.richards on instagram whilst you wait for a diagnosis. She's managed to control a lot of her symptoms naturally.

www.instagram.com/sophie.richards?igsh=bDVlbGp3dXNzeHow

Op, what part of the country are you in?

I went to the GP 3 weeks ago, have had bloods and an ultrasound done, he agreed today to refer to gynaecology (19 week waiting list) for a hysterectomy as I have both endo and adenomyosis showing on the ultrasound. Even then the nhs is showing another 20 weeks until surgery; but it should be within 12 months of first going to the doctor about it (I’ve lived with it for much longer, but cannot fault the NHS since I’ve actually told them it’s an issue!)

I think you were lucky both with the GP and with the fact that your ultrasound gave you a diagnosis. And that’s great but it’s not the majority of cases. I ended up joining an online group of women with either diagnosed endometriosis or convinced they had it but still awaiting a diagnosis and the stories are really shocking.

Just been reading in the Times today how successfully Mounjaro has been treating endo in some cases…..

Yes, it’s due to reduced inflammation and body weight where applicable, people are noticing huge reduction in symptoms. But I don’t think the op can afford it. However, it maybe a significantly cheaper option than private health care, have more sure results.

but again much comes down to her other medical conditions and also is she eligible for the drug, as she’s not said her weight.

My son has so many of these cards, not sure if all are sellable, but the money would come in handy for uni fees. Where’s best to sell them?

Sorry to change subject of thread with this Q.