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.

OP can you clarify exactly where you’re up to with requesting tests / diagnostics through the GP? As many of us have said, nhs diagnostic and treatment is absolutely possible but you have to be persistent and stay on it. If you’re not getting anywhere, book a BSGE appointment and scan/MRI. It should be a good place to start. With the right clinic then you may be able to be diagnosed via imagery now - mine was. You can then take that info back in to the nhs system for treatment.

Have you been refused a referral on nhs? Have you had a scan? Have you seen anyone? Apologies if I’ve missed this information.

It’s an awful condition but you need to advocate for yourself. There are some brilliant specialist forums and groups on Facebook from women going through this or have been through it.

This is nonsense. My daughter was awarded Pip first time, as were many people I know.

It took me 18 years to get a diagnosis for endometriosis.

First went to the GP at 14 years old. Was told it’s “just a bad period”.

Then years and years of being on hospital waiting lists, having scans, trialing numerous hormonal contraceptives to ease the pain. Being gaslit and dismissed and being told it’s “all in my head” by healthcare professionals.

Finally had a diagnostic surgery under NHS at age 32, to finally be told it’s endometriosis.

@Miserablelittlesoul - solidarity. I’d ask your husband to book a private consultation with a specialist that also works for the NHS, for you to be added to the NHS waiting list.

I have endometriosis, I think you'd be wasting your money paying for a diagnosis you can't really afford. Treatment options on the NHS aren't great and the only way to completely get rid of it is a hysterectomy which you could probably get without endometriosis diagnosis if you don't want children.

The lack of awareness and education on endometriosis in this country is absolutely diabolical 😞

Incorrect sadly. A total hysterectomy does not get rid of endometriosis. Nothing gets rid of it. It is a total chronic incurable inflammatory disease. It affects the whole body.

But you can't pay it back - you don't have an income?

Are you planning on having any more kids? If not, and I don’t know how possible this is, but could you go straight to a hysterectomy? I think it’s the only real way to “cure” endo.

I've had endometriosis and adenomyosis for years, diagnosed via laparoscopy. But having that diagnosis has done nothing except given a label to the pain and heavy periods.

Only treatment I was offered was surgical menopause, progesterone via coil or tablet or nothing. So depends on where you are with wanting/having children, I'd recommend not getting a diagnosis and just opting for progesterone and turning off your cycle that way.

Been on it years and finally have relief.

Horrific condition and I sympathise as it controls your life.

I have adenomyosis and probably endo too. The mini pill has helped me and I used to be housebound during my period.

OP you say that you wouldn’t expect your DH to pay the debt and that you would pay it back but you also say that you have no income and you recognise that spending on the credit card isn’t a guarantee that you would get a diagnosis and treatment that would enable you to go back to work, so you are contradicting yourself.

It is not ok to pressure someone to run up debt in their sole name, even your own husband.

The Pokémon collection might rise in value in the future, but what’s the point in waiting for that if you won’t sell it anyway? It is worthless if all it does is sit in a drawer.

So if it’s ultrasound you’re waiting on, that’s £175 at the clinic near me. You don’t need to go wild blowing out your credit card. Just get a private scan and see what it says.

Why would it be 8 years for diagnosis?

My daughter was referred for laparoscopy in January last year and had it in December, where it was confirmed endometriosis and they burnt off the areas she had it on her right ovary, pouch of Douglas, bowel and bladder.

We were at her follow up consultant appointment last month where they've basically told her to go on the mini pill and there's nothing further they can do. The consultant said they wouldn't perform further laparoscopy because as wev discovered the pains already returned, which is crap when she's trying to work 12 hour shifts on a ward in agony. He also said the good news is at least you don't have cancer (we had never thought it could be cancer) but you personally won't be able to conceive naturally and will need ivf. Thanks for that 🙄

It took me 8 months from me initially going to the doctors with the pain to having a laparoscopy, where they found and removed endometriosis. I know lots of people have to wait longer but I wouldn’t be able to justify spending that amount of money that I don’t actually have.

I have fibromyalgia and understand how debilitating living in constant pain is.
But the process has started. Get in touch to with your doctor to find out wait time.

If you were to pay to get a diagnosis as a private patient what do you think the NHS would then do.
They offer very little treatment really, even when diagnosed

Or are you thinking a private hystorectomy?

I got pregnant (without trying but not preventing) about 4 years after having my endometriosis removed. So it is possible. We had gone 7 years before that unprotected and hadn’t got pregnant.

Sorry, but the "worst day" test is for DLA, not PIP. PIP is based on whether or not you can do things "the majority of the time", and by that they mean 4 days pw.

However, being able to do things means doing them safely, to an acceptable standard, repeatedly and within a reasonable time period.

Google "PIP descriptors and points", OP and see how many points you think you should get, when applying the criteria above, then request another form. Book an appointment with CAB or similar advice agency for help with filling it in, the help of an experienced welfare rights person will maximise your chances of success.

Yes, I was too.

I did however use the excellent Benefits & Work website and researched it all exhaustively. It was like researching and writing a dissertation, with full supporting references and appendices. This was followed by a phone assessment lasting - I kid you not - 2 hours and 20 minutes.

The whole thing’s exhausting for people who are already under the stress of pain.

This is not allowed. The rules specifically say that for fluctuating conditions you should describe your worst days, better days, and 'good' days, then say how many of each you get each week, or month, or year, depending on how much your condition fluctuates. It's considerrd fraudulent to represent every day as your worst day if you have some days that are better.

It shouldn’t ever be ablated, it should always be excision with a BGSE centre but that’s often a long wait
gynae in my area is 1-2 years for initial endometriosis appointment

Surprised to see OP being advised to pay privately for a Hysterectomy. She hasn't even been confirmed that she has endo yet! It's a bit early to be paying privately for a major surgery, which is not without considerable risks, to treat something she may not even have.

This is good to know thanks, she's done 7 years without contraception with the two partners she's had and never fallen pregnant so I think that's what he was basing it on and how badly her right ovary appears damaged. He showed us the photos prior to removal and it appeared completly black. She still has the left though. I think we are going to look into freezing her eggs in the next 6 months.

It's been a few years since I was offered the option. I don't think the condition is all that well understood now but it was even less understood back then.

I know someone who had endometriosis and became pregnant after endometriosis removal. I knew her well but professionally and when I went in for my appointment she was glowing and bubbling over with joy. She was delivered safely of a baby boy so it is possible.

A Hysterectomy is not necessarily a cure. Endo can still continue to grow outside the womb (on the pelvic walls, bladder, and the bowel for example) even if the womb and ovaries are removed so whilst it can significantly improve things for some women, there are no guarantees.