Ablation vs excision - does anyone else feel cheated?!

[olive165]

Hi,

My story:

NHS lap 16th December 2016 confirmed stage 1 endo and "removed" via diathermy. Private healthcare lap 28th March 2017 confirmed STAGE 3 endo (due to not being removed!!!!) spread throughout my entire pelvis and removed PROPERLY via excision.

Private surgeon said endo should NEVER be ablated (diathermy) because it just doesn't work and all your doing is burning and agrivating the top layer - leaving the roots - like an ice berg.

Hence mine coming back in revenge only 4 months later and rocketing to stage 3.

Does anyone else have a similar story? And what did you do in the situation? I don't know whether I'm in a position to complain??

Thanks x

[Hidden]

I think it's more likely you were Stage 3 all along, was your NHS lap at a BSGE specialist centre?

If not, and your lap was not performed by an endometriosis specialist, it's likely that endo was missed which was picked up in your second lap. It's only my opinion but I doubt your first lap made your endo worse, it sounds like it wasn't the best treatment though xx

[olive165 in reply to Hidden]

Thank you for your reply

Unfortunately it was performed at a general hospital by a general gynaecologist with no specialities, so I guess they must have missed it and underestimated it.

I think maybe because they used diathermy it just made it all angry? Because it had been removed from pouch of Douglas and ligaments where as this time it was in my pelvic walls and had attached an ovary to the wall and it was just everywhere xx

[Marcia71]

I had hyster at private hospital but by a general gynae who left endo but did at least diagnose me. So went to a private endo specialist who used diathermy to remove my endo and of course missed it. Finally had treatment at bsge on the NHS and I finally feel better.

You can try writing to complain and I did. But I was told it's just a difference in medical opinion and different treatment options and there's really no argument against that.

Best to just accept you've now had the right treatment and pass your knowledge to other ladies to help them get the right treatment too.

[olive165 in reply to Marcia71]

Thank you for your reply.

I do completely understand and I think I'm finding it hard to come to terms with what the general gynaecologist did because she didn't even give me a follow up appointment or referral or anything and she told me she had completely removed it all with diathermy and I would now be endo free, then find out 3 months later on at stage 3 and it had spread. But I need to be positive as fingers crossed it has been removed properly this time hope you're doing ok!!

[Marcia71 in reply to olive165]

I do understand. I was so angry at what had happened to me but over time realised it was better to use that anger in a positive way and get the right treatment for me and hopefully save others going through what I did. Just remember it wasn't your fault any of this happened and be kind to yourself. Endo totally messed with our hormones and emotions so don't be surprised with any feeling just learn to accept it. All much easier said than done I know!

I finally feel I'm on the road to recovery after a horrid couple of years and intend taking my own advice and being kind to myself.

[Loulou24]

I was in the same position as you. I had ablation at my local hospital under a genral gynae. I didn't know about specialist centres at the time. The pain came back very quickly so I'v e seen a private specialist who confirmed the endo was back but also diagnosed me with adenomysosis as well. I'm to have excision this time on the endo.