Has anyone been to specialist endo center... - Endometriosis UK

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Has anyone been to specialist endo centers on the Wirral or in Bristol please? Has anyone else travelled a long distance for surgery?

Eggcustard profile image
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Hi everyone, I don't have a specialist center near to me and so am considering travelling to the Wirral or Bristol for treatment. Has anyone been to either of these please? I need excision surgery and a hysterectomy at the same time and am worried about the journey home, has anyone else travelled a long distance? Just travelling home from the local hospital was bad enough last time but I have long term chronic pain now and really need to go to a specialist center.

Thanks

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Eggcustard
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Impatient profile image
Impatient

I had a 20 mile drive home after my laparotomy, and was heavily dosed up on pain killers for the journey, by the hospital. It was fine and I was so pleased to be home.

but 3 weeks later we had to move house 300 miles and I wasn't ready for that kind of trip

having only expected to have a regular lap op, plans went haywire.

I stayed with a relative for a couple more weeks before making the journey with plenty of stops. I wasn't driving or fit to drive and left my car with my relative till I was well enough to travel 300 miles to collect it and drive it back to new house. That was about 8 weeks post op.

My mum did all the driving for me until I could collect my car, and she and I drove the 300 miles in convoy.

So from the point of view of a long drive, I don't think it is unreasonable to ask the hosp to dose you up with strong pain relief and sedative, so hopefully you can dose off on the journey back if someone collects you. I probably wouldn't bother trying to get the train having just had a big op, although sitting near a loo could be handy, there could be plenty of steps to climb and a bit of a walk too, and that level of exercise is way too much post op.

I'm hoping for a referal to the Wirral endo centre myself, just booked to see GP to get that underway next week. That's about an hour and a half drive from my house each way. Not ideal, but is the closest to me, and I would rather at this stage get myself under the care of a multi-disciplinary team which actually knows what they are doing (hopefully) and keep it all in one place separate from my regular hosp, which is slower than a snail reversing.

Eggcustard profile image
Eggcustard in reply toImpatient

I know exactly what you mean, I think the journey will be well worth it especially as I now have chronic pain issues as well as the endo. I will have someone to drive me, can't believe there isn't a specialist center in the midlands though, typical!

I had a lap with my vyas at the spire in Bristol. Excellent consultant. Would use him again. Very personable and knew my symptoms before I told him!!!

Eggcustard profile image
Eggcustard in reply to

Thanks for the reply, that sounds great!

stevieflp profile image
stevieflp

Hi - yes I travelled from London up to South Yorkshire to Elland for total radical excision and I was worried about the journey home - I was not driving, it was fine and I slept most of the way. As I was discharged mid-afternoon and it was winter, I stayed over an extra night to be near the hospital and also so that we could travel home in daylight. I went home with a catheter so that helped not having to get out of the car at service stations and go to the public loo!

All best wishes to you

Eggcustard profile image
Eggcustard in reply tostevieflp

Hi, thanks for the reply. Did you go to your local hospital to have the catheter removed when you were home?

stevieflp profile image
stevieflp

Sorry I meant to say I stayed an extra night in a local hotel.

stevieflp profile image
stevieflp

Hi - yes, the Spire hospital in Elland booked me into my local Spire hospital and I went there a week later to have the catheter and my stitches removed. They also did a scan to make sure my bladder function was ok.

It was well worth the inconvenience of travelling to make sure I saw someone who was skilled enough to deal with my level of endo, rather than relying of whoever was about locally.

Best wishes

wp22 profile image
wp22

I am under Arrowe Park on the Wirral, as I am local I don't have to travel, it is a couple of miles from where I live. Have found them very good upto now with regards to laps, (I had 1 exploratory and 1 excision) which was 5 hours from start to finish. Due to go back #2 in May for the rest (God I hope) they remove remaining endo patches from ovary and rectum, also 3 fibroids too. I stayed in overnight last time but was in TOTAL agony though when I attempted to walk out of the hospital LOL. A lady of 66 said " are you sure you are fit enough to go home" I felt like I was 66. I was a mess and only had 10mins drive home, so can't imagine what its like with a long journey ahead. But I think you have to put things in prospective I can only go by experience but it is the skill of the surgeon and the type of op, in their case at Arrowe it is excision that should be the most important thing to consider here. There are a couple of v good excision surgeon, both whom are doing my next op (don't want to blow my own trumpet or talk too soon but I guess I am fortunate the way that has worked out) up to now touch wood and all that! I would definately say that excision is the way to go. I will find out sometime after next op if what was excised in first op if any of it has grown back already. God, hope not!!!! I will say after 6months my pain has died off and tbh don't really get much at all at mo, but I do have symptoms and it does remind me sometimes that it is still there. I am ttc with no luck but I presume it is because I have spots of endo on my right ovary which I want removed (without removing my ovary) as this would devastate me beyone belief. I want 'all my woman bits' to stay intact! I am sure going to see them at Arrowe (as with all hospitals) a long wait but on average 4months from consultation surgery, this will be worth your time and effort. If you are struggling to find a good excision surgeon where you live then you HAVE TO go elsewhere. Good luck X

Eggcustard profile image
Eggcustard in reply towp22

Thanks so much for the reply, they do sound very good. It's just the journey that's putting me off. One of my surgeries lasted 4 hours and the thought of travelling afterwards is awful. I am considering maybe staying over someowhere for a few days until the pain settles a bit but I have a 6 year old daughter to sort out too! I do think I will go for a private consultation and take it from there, looking into it all today and the info you sent has been really useful, thanks xx

wp22 profile image
wp22

Eggcustard

I totally know how you feel regarding the op. Mine too was over 4hours long and afterwards couldn't walk to the toilet let alone be on a long car journey back home. But in the long run it may be worth it because I know there are only a few excision surgeons in the country for this kind of surgery. If you do decide to make an appointment in the future and go onto have the surgery up here let me know and I will try and help you if you need any info on places to stay etc. X

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