Stage 4 endo -advice about going private ... - Endometriosis UK

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Stage 4 endo -advice about going private please!

Heart92 profile image

Hi all,

I have stage 4 endo, mainly in the bowel and have been told I need a bowel resection but the waiting list is still 2 years. I’m thinking about going private but can anyone shed any light as to how much it is likely to cost? And where do I even start to get the ball rolling with going private!?

Thank you in advance everyone xx

19 Replies

Hi!

I've recently had treatment done privately, with more to follow shortly.

To get the ball rolling, you'll need an open referral from your gp. Then you can find the private consultant you'd like to see, and contact them to arrange an appointment. This differs, I think, but consultant/hospital and whether you're using health insurance - but the process to make an initial appointment should be on the hospital website.

As for cost, I have no idea for a bowel resection. For reference, my most recent lap was around £5,000, and my hysterectomy is estimated to be around the same again - and that's just for the basic TLH. If there are any complications, or it turns to open surgery, the cost will be significantly more. But again, some private hospitals have a basic guide to costs on their website so you can get a bit of an idea before you book.

Good luck ❤️❤️

Heart92 profile image
Heart92 in reply to EndoSuckss

Thank you for your reply, that’s really helpful 😊.

Apologies if my questions seem daft, where would I look to find a consultant/hospital? I’ve googled and found one in Birmingham but hoping there’s some closer to home!

Was the £5000 for a diagnostic lap or did you have work done as well e.g. excision?

Thank you again ❤️❤️

EndoSuckss profile image
EndoSuckss in reply to Heart92

Hiya! There's no daft questions at all!

In all honesty, I don't know the best way to find a private hospital/consultant - I'd say Google 😂 I picked mine as it was the closest thay offered what I needed after a Google search.

The lap ended up being not much excision - it turned up it I needed a hysterectomy but as I hadn't given consent it's all getting sorted in December in the next op! If excision had been more extensive, I think it would have been more expensive!

May I ask where u had the lap because I recently asked a private clinic and wanted 9k for normal endo lap. Was with a specialist the lap?

I had mine at a BMI clinic

Hey I thought I would pop on a reply as I have also looked at private care recently, for complex bowel procedures it can get quite expensive, I think it depends where you are as well as the clinic, ones I’ve seen can go from £5000 up to £22000 for very complex ops!

One thing you should definitely look at is your right to choose! If you go to the nhs hospital finder and type in your area it’ll list up lots of hospitals including private ones, you can click on the hospitals and it will tell you if they take on nhs patients. Once you know they take on ‘right to choose patients’ scroll right to the bottom and you’ll see ‘full list of departments’ click that and then gynaecology and it will tell you their wait times, they are normally considerably shorter than nhs hospitals! You can go on to the hospitals website and check that they do cover the operation you need and then you can request a referral under your right to choose due to the long waiting times ☺️ It may help you get seen sooner, if you need any more info, feel free to drop me a reply or a message xx

Heart92 profile image
Heart92 in reply to Matj2580

Thank you so much for this, I’m going to look into it! With ‘right to choose’, if they accept nhs patients would I still have to pay? Xx

Matj2580 profile image
Matj2580 in reply to Heart92

So you can book private hospital spaces through nhs choose and book and it is funded by the nhs and carried out by the private hospital they won’t all do it but if they do it is free to use xx

Hiya, obviously not the same as bowel resection, but I needed a bowel shave with endo excision and mine was going to be about £8K. I was told the price depends a lot on the amount of surgeons and team needed present, so if a bowel specialist was needed it would have been more like £10K. I can't suggest the best way to find your ideal consultant, but I found mine by searching the BGCE centre nearest to me and who their lead was and whether they worked anywhere privately, then phoned their private secretary. Phoned on the Wednesday, had a consultation by the Saturday and was scheduled for surgery a month later.

Heart92 profile image
Heart92 in reply to G3miniStar

Sounds like mine might be quite expensive then 🤦🏼‍♀️, pretty sure I’ll need a bowel specialist, maybe a bladder specialist and I guess an endo specialist. Wow that’s so quick that’s amazing! Thank you for your reply ❤️ Xxx

Bra1984 profile image
Bra1984 in reply to Heart92

Hello, sorry to hear you need that; endo really is no fun. I had stage 4 endo that caused a lot of issues so had a multi disciplinary team which included a gynaecologist, bowel surgeon and urologist to all work together as it can be very complex. The other thing to consider is with bowel surgery they often like to have you in hospital about seven days after. I think in total, mine cost about £24,000 but it was covered under private medical insurance.

I’m not sure if you have private medical insurance but either way I would recommend calling up Bupa or Axa to see what gnaeo’s they recommend at a hospital you have in mind and then go from there if you don’t have a recommendation. In my experience, the gnaeo normally has a team they work with on complex cases so they take the lead with managing.

On a positive note, 3 years after having the operation and I’m still pain free so was 100% worth it.

Good luck with it all!

Heart92 profile image
Heart92 in reply to Bra1984

Thank you for your reply 😊. Unfortunately I don’t have private medical insurance, looking at loans but they’re extortionate, but I feel I can’t wait either so stuck between a rock and a hard place! So lovely to hear you’re still pain free, there is hope! Xx

Bra1984 profile image
Bra1984 in reply to Heart92

I can totally sympathise - it’s a lot of money to pay so you have to weigh up the options. Perhaps try one more with your doctors to see if there’s anything they can do to expedite in light of it being severe endometriosis. Also, one thing to add was with this surgery they used excision rather than lasering which meant recovery was longer however it provides longer term relief so would advocate for that. Wishing you so much luck xx

Heart92 profile image
Heart92 in reply to Bra1984

Thank you, I think I will try and push my drs see if I can get anywhere with them first. My NHS surgeon said he would do excision not ablation luckily, as after lots of research ablation seems like a waste of time! Thank you again ❤️ Xxx

Bra1984 profile image
Bra1984 in reply to Heart92

I had ablation twice before and it provided temporary relief but really didn’t get to the route of the issue so excision all the way.Best of luck 💗

Hello, I have paid for 2 surgeries. The first was done by a non specialist in endometriosis so it left me needing a further surgery. So I would highly recommend doing research. My first surgery was 5000. The second, because I need bowel surgery, was 10000. This was the cost for the gynae consultant as well as a bowel surgeon. It's going to take me a long time to pay this all off but I couldn't take the 2 year wait. Good luck with your search and surgery xx

Thank you for your reply! So sorry to hear you were left needing further surgery because of someone’s incompetence, it blows my mind that this happens so regularly! Your bowel surgery, may I ask if it was a resection? Xx

Hi - please join Nancy’s Nook Facebook group. There is a list of surgeons who specialise in difficult excisions, and the group is a wealth of endo knowledge. All the best! facebook.com/groups/NancysN...

Thank you, will join it now ❤️

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