Excision surgery..: Hi, has anyone had... - Endometriosis UK

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Excision surgery..

ConfusedGirl profile image
9 Replies

Hi,

has anyone had excision surgery for endo? if so did it work for the long term? was the pain gone?

also if any of you ladies went private and had to pay for it how much did it cost roughly? in my area the NHS only offer the laser but id prefer excision if possible..

thanks xx

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ConfusedGirl profile image
ConfusedGirl
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9 Replies
jojo777 profile image
jojo777

Hi there

I just mentioned in another post that I had excision to remove all endo 12 days ago. Laser is old fashioned method (my gynae mentioned laser as very 80s) and doesnt take the root of the endo spots. With excision the doctors can go all the way and remove all of it (when the circumstances etc allow them).

I'm still very sore as where they cut my nerves are still healing, but by being endo free at the moment, I hope it will stay longer like that :)

I did both private but I have private insurance so I'm not sure how much it costs. I would say roughly around £3000, but again I'm not sure xx

ConfusedGirl profile image
ConfusedGirl

thanks for your reply JoJo. :) hope your feeling ok after your lap.. im going to try look into surgery.. i dont get much pain between my periods but when im on a period its absolute agony :( xx

jen1982 profile image
jen1982

I've had mine excised on the NHS twice now, the first time I was pain free for about 8 months. I had an op 5 weeks ago to have the same but I don't think it's worked as I'm in agony and it feels exactly as it did before. I was told by my consultant that you have a *much* better chance with excision as it keeps it away longer but I think it's an individual thing and depends how bad you have it as to how quickly it might return. Some (rare) surgeons offer radical excision which has an even better chance but you'd probably have to travel or pay for that. I travel about 2 hours to see my surgeon at a specialist endo centre and I can say he is more than worth it. He will keep operating and as my GP said that is one of the most important things.

You can definitely get it done on the NHS, you may have to travel out of your area but I wouldn't dream of going anywhere else now and it's totally free xxx

jojo777 profile image
jojo777

Yes, I had radical excision too, nothing left inside at all.

You have to give time to yourself Jen, sometimes if nerves were involved where your endo was, it will take a long time to heal. It doesnt make sense to have it cleared but still be in pain, so its neurological pain, give it time and take multivitamin supplements, especially vitamin B etc that is the best for these kind of pains. Unless they didnt clear it properly that is quite unlikely too.

Jo x

genarowlands profile image
genarowlands in reply to jojo777

Can you tell me where you had the radical excision done?

sully1 profile image
sully1

im on a waiting list for this if you live in the somerset area my new consulant dose it at taunton hospital and someone up in yorkshire area aswell

stevieflp profile image
stevieflp

Hi Yes I had excision surgery almost 2 years ago (8th Jan 2011). Mine was up in Yorkshire. I am not allowed to name names.

The thing with excision surgery is that there is 'patch' excision which does what it says on the tin and removes patches of endo. That is effective if you have endo only in smaller patches. But you might end up suffering again later if there was endo developing under the surface that was not seen at that time in other places.

Unfortunately, mine was widespread (ovarian endometrioma, bladder, on the bowel, uterus, recto-vaginal, diaphragm . . . bowel and ovaries etc were misplaced due to being stuck up) and so patch excision would not really have sorted me out.

A previous consultant had said I was 'in a mess' and my only option was a hysterectomy and removal of the ovaries. I now know that because of my widespread endo, this would have been extreme and would not have sorted out 'the mess' as it would still have been all over everywhere else. Like using a mug to empty bath - would hardly have made a difference for all the trauma.

It is important to get the right treatment for the level or endo that you have. For someone who just has adenomyosis, a hysterectomy might well provide relief , but it is not necessary to remove the ovaries aswell unless they are diseased beyond salvage. Mine were pretty bad but the surgeon managed to save them and they are working fine - for someone with small patches of endo, patch endo will do the trick - it has to be the right treatment relative to your level of endo and where it is situated.

I had what is called 'radical excision'. This is where the whole lining of my peritoneum was stripped out (excised - cut away) with the organs separated and put back in place and all seen and unseen endo removed in the process.

I can honestly say that to-date I do not have endo symptoms and my monthlies have been the best I have ever had (being I am 50 that is saying something - all those years of the curse!))- I tend to forget I am an endo sufferer and I have not hit the meno yet at all so still regular. I was crippled up each month prior to that and sometimes in between.

The best part of it is that I avoided having a hysterectomy or oophrectomy (removal of ovaries). I didnt want temporary menopausal drugs, an enforced early menopause and I did not want to have to rely on HRT. I wanted a solution that got rid of the endo and put me back in the position I was in before it took a hold. Lot to ask for I know.

I did go private. I was covered by health insurance and I really cannot recall exactly how much it all cost now but it had to be somewhere around the £7 -10k mark overall. I had an initial investigatory lap in the December followed by a 7 and half hour op (keyhole). The dedication of the surgeon and the team was just amazing .

Two years later the team still monitor how I am doing by questionnaire and I have even had a call fairly recently from the surgeon to ask how I am. It was the best thing I have ever done. It is impossible to say if I will ever get it back again - at least when I hit the menopause I can console myself that it will lessen the chances of it coming back. The two years though have been worth the 7.5 hour op. I would do it again.

martoosha profile image
martoosha in reply to stevieflp

hello,

I had operation with this same dr. ashwin trehan (yes its ok to mention a dactor), mine was 12h long and it was very tough. Im 9 months post op and I have some pain back. Also had scan done by doctor near london and again my left ovary is tucked in (sign of active endo) and some liquid around it. anyways...of course radical excision is the best technique but endo can come back if you dont take care of what you eat, yoir hormon balance etc...end even that can still come back :-(

Clem01 profile image
Clem01

I've had 7 laps over the years excision twice and lazered the rest. The first time I had excision done I had 5 years pain free. The lazer only lasts 1-2 years max. Private I think is about £3000 but your consultant will give you everything before. Good luck

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