Private surgery is so expensive! What should I do?

[Mimikon]

Hi all,

Sorry this is a long post, I haven’t spoken to anyone who can relate before.

I started my period at around 10/11 years old and have been in and out of GPs, hospitals ever since. I’ve had all types of contraceptives and have bled through them all. No pain relief works either. I am now 26 years old , and have only got my endometriosis diagnosis this week by going for a private MRI.

I’d gone to Paris for a pelvic MRI in 2018 , where they’d found deep endometriosis but when I came to the UK, they did a laparoscopy and didn’t find any . Instead , they said my ovary was stuck to my fallopian tube and cut away the adhesions. They put in a Mirena cool and sent me away.

Fast forward to this week’s result, I have a small swollen left fallopian tube(where the they cut the lesions) and endometrioma on my left ovary. The medical fees cost £10k without the additional surgeon fees.

My surgeon says the NHS is unlikely to do my surgery as it isn’t considered severe enough. So essentially I would have to wait for either my tube to burst or my endo to spread.

My family and I do not have £10k so my mum wants to take out a bank loan but I feel extremely guilty. My heath insurance also doesn’t cover pre-existing conditions. The pain is unbearable and I am mentally at breaking point.

Has anyone been in this a similar position? What did you choose to do?

Best wishes

M

[Pelvic_pain]

If you have an endometriomas confirmed, that suggests a complex case that should be treated by a multidisciplinary team in a tertiary care centre. Often GP's do not realise it, but they can refer you directly to these. Do a little research on BSGE centres local to you & the surgeons that work there to see if you feel comfortable with any of these, then try & get your GP to refer you directly. There are still long waiting lists so you may want to try & find the best surgeon you are happy with on these BSGE centres & see if you can get a private consultation with them (assuming they also do private work). If you're really lucky, the doctor may be happy to put you on his/her NHS list

[PanicAtTheHorizon1]

I had my surgery through the NHS and didn't have any scans or anything close to having any prior indicators for endometriosis other than pain and fatigue. I'm fairly certain the NHS would do this procedure, especially if you've got evidence to show how important it is to have this done.

How long you have to wait is another thing though. I waited 10 months from the 'okay, yes, we'll do the surgery to see if you have endo' to being wheeled into the operating theatre. I get NHS responses vary depending on where you live, but considering most NHS doctors are still using laparoscopy surgeries to diagnose women, even if we have to fight for it, it seems odd they'd just say no. And then there's the level of skill (or lack of) of NHS doctors, but still, seems odd they'd say they can't?

It's worth asking your NHS GP about it and double check. My gut instinct tells me that maybe you're being told the NHS can't do it so that the private clinic gets paid??

[RedCat24]

I had multiple endometriomas on my left ovary... 4 I think, it took 7 month from nhs finding them to having surgery, I signed for my left ovary to be removed due to them, in theatre they had gone (baffled me because I was 4 month in taking zoladex, they wouldnt answer my question as to howhad they disappeared) my ovary didn't get removed and no endo found. Fast forward 6 month later I went private for a consultantation and mri, confirmed adhesions and endo, I then paid for surgery, endo found and ablated 2 endometrioma drained and adhesions separated. It's not sorted my pain and I'm now worse than I was before surgery. I hope you start to feel well enough soon x

[Palomino13]

Hello!

I waited 5 years on the NHS repeatedly being gas lit and told my case was routine and there was little wrong. I ended up getting so severely ill, I lost my job, and mental health deteriorated I had no choice but to pay for my own operation.

I’m happy I didn’t wait because the endometriosis was so severe I had lesions all over my bowl and had to have some of my bowl and ovary removed. I had adhesions everywhere. Mine cost around £15,000, which is a lot of money but if I hadn't paid I would still be here waiting for the “routine” operation. The waiting part was worse than the operation, not being able to work, live, getting into debt, not knowing what was wrong.

You need to do your own research because if you don’t you will waste years of time being gas lit by GPs, doctors, surgeons. I wouldn’t bother speaking to that surgeon again or would I believe what he is saying. You have every right to be treated. You need to see an experienced Surgeon who is BSGE. Perhaps pay for a private appointment with a specialist surgeon who also works in your local NHS hospital and see if they can put you on the waiting list. At least you will skip the initial consultation.

I hope you get better soon xx