Private or wait?: I know no-one can... - Endometriosis UK

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Private or wait?

Nbubz profile image
10 Replies

I know no-one can actually really answer this question except for me. But it would be helpful to hear some other opinions!

After two really negative experiences with NHS consultants, I decided to go private to get a second (third?!) opinion. All scans and tests have come back clear but the private consultant (endo specialist) said he would do a laparoscopy because I’ve had a load of other tests (bowel and bladder) and this is the next logical step considering I have most of the endo symptoms and a family history.

I’ve just got the quotes through for prices and they’re so much more than I expected. I’m lucky enough to be able to afford it, but worried everything will come back negative and I’ll have just ‘wasted’ a huge amount of money. I’m on the NHS waiting list as well, but cannot afford to take time off work (I’m a teacher) so going private really does have its advantages. I’m concerned about fertility, so having surgery could at least put my mind at ease.

To go for it or not…?

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Nbubz profile image
Nbubz
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10 Replies
AllthatGlitters profile image
AllthatGlitters

Hi you can have a private consultation (I did at the cost of £200) then you can be referred back to the NHS for scans/operation etc x

Nbubz profile image
Nbubz in reply to AllthatGlitters

I did think about this, but timing wise it would impact on work too much!

Lucyloo02 profile image
Lucyloo02

Hiya

I would honestly say go for it if you can afford it!!!

I couldn’t at the time but thankfully family helped me. I had my Lap privately & it was the best thing I did. I was so worried it was gonna be a waste of time & they wouldn’t find anything, I was dreading waking up and hearing nothing was found after spending so much money.

I was on the NHS waiting list too but just felt like I couldn’t wait, so decided to pay. I’m so glad I did because after years of fighting different consultants on the NHS I finally got my answers. Also just over a month after my consultation I was in having my Op so it all happened so fast.

I’ve had a lot of people say to me well if he’s offering you it on the NHS wait, but sometimes it’s not about that, there’s a lot of things to consider & me personally I couldn’t deal with the pain anymore and just needed something to be done about it.

GoodLuck whatever you decide Xx

Nbubz profile image
Nbubz in reply to Lucyloo02

Thanks so much for your reply. You’re right that there’s just so much else pushing things forward apart from just cost. I’m lucky that my really bad pain comes and goes, but there’s usually some sort of pain every day and I’d really just like answers! I’m glad everything worked out for you!

Lucyloo02 profile image
Lucyloo02 in reply to Nbubz

It’s honestly so worth it when you weigh everything up. I’m almost 8 weeks post op & so glad I had it done privately when I did because I’ve never felt this good like I have the last 2 weeks….without going privately I’d probably still be in a lot of pain

JulesUK profile image
JulesUK

I’m so grateful that when I was going through my worst that I had private health cover (no longer unfortunately) My first few experiences were awful with NHS - operation being done incorrectly, lost all my notes (I could go on) then just having the time with a private doctor to be listened to, to know I could call if I needed to and that I would have a follow up appointment quickly and everything would be explained to me was a great relief. Also being able to see the same doctor is very useful. I had full confidence in the doctor/operation and the follow up. Even if no endo is found in your operation you’ll have some answers. Hopefully though they will find out what the problem is if it’s not endo. I don’t believe it will be wasted. My niece has been waiting years now to be properly diagnosed it’s so sad to see.

Nbubz profile image
Nbubz in reply to JulesUK

It’s strange being in a situation where you don’t want them to find endometriosis but you also do! Thanks for your reply and I hope your niece makes some progress!

BikeRiderGirl profile image
BikeRiderGirl

Hey. I had the same dilemma as you! I was waiting for a laparoscopy and being given no sense of time to wait from the hospital. At the same time the pain was getting worse and worse and it was starting to really impact my work. I'd saved quite a lot over the last 18 months with not commuting in London and basically decided to use that money to go private. I do feel both guilt and anger that there is this two tier system now for folk who can afford it but I just had to do it. I was also super worried they'd find nothing, but my consultant spoke through my symptoms before and was pretty convinced he'd find endo, and I trusted him, though it was still in the back of my.mind!. My lap found endo, which was excised, and also confirmed adenomyosis too and while there they inserted a merina coil too. It was expensive (beware the extras - like blood tests or MRI scans not included in the operation quote!) but 100% worth it. Now I know what is wrong and I've been able to start making changes to my lifestyle that might help along with the surgery and coil, as well as having a diagnosis to discuss with work. I do have to keep reminding myself, and loved ones, that it's not just a case of get the op and you're done though, and that is hard. To spend that money but know it could still cause issues and it's not cured is hard, but that's the nature of endo rather than going private! I think other folk have said it but just make sure you get a good private consultant who is BGSE registered, they also usually have reviews online :-)

Nbubz profile image
Nbubz in reply to BikeRiderGirl

Thank you- yes, the consultant I’ve seen is BSGE registered and that was a real selling point too. I know that if I have it on the NHS and they say they didn’t find anything, I’ll not fully trust that… at least this way if they say they didn’t find anything, I’ll be more confident. Really good point about other costs, though!

Millabajack profile image
Millabajack

Hi , I’ve been on the waiting list for surgery for 18 months , I reached breaking point the other weekend and decided I would find a private consultant….. but before I committed too this I rang my consultant and asked how much longer my wait was likely to be on the NHS ……. I was told I was still a long way down the list and would likely be well in to NEXT year before I got my surgery…… and if we have another winter of COVID that is likely to increase. Ive now booked to go private but even that has a 6 week wait to see the consultant, due to popularity and demand! Which is hardly surprising considering the time I’ve waited and how much more time I will need to wait to get treated on the NHS no doubt all the Leicestershire woman have decided to go private….. my biggest regret is not doing this 12 months ago. If I’d of known then what I know now I would of done this 12 months ago, instead Ive suffered whilst waiting for nothing to happen.

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