Advanced surgery for endometriosis

[jemmadavies88]

hi i was wondering if anyone has had surgery for advanced endometriosis on womb and bowel? i had a laproscopy last year where my endo was lasered and have been on the decapeptyl injection with hrt since but endo has come back last 6 months with a vengeance so they are saying they need to perform advanced surgery where they will be shaving and discing and potentially segmenting? this is now a last resort before hysterectomy (im only 24) any info on your experiences would be great!!

Thanks

[OosengaoO]

Operations might help your symptoms but they won't "cure" you, there us no cure for Endo. Instead of burning your Endo they are going to try the next stage, im surprised they have mentioned a hysterectomy at your age. I'm 35 and they won't give me 1 even though I've been in constant pain for over 10years.

Are they doing it keyhole like your lap? You will be mire tender than your lap but hopefully you will feel some relief

[Loulou1980 in reply to OosengaoO]

I'm 36 and going in next month for full hysterectomy and having large part of bowl removed due to severe endo I wasnt giving another option as so severe so they said hysterectomy straight away I'll also be ending up with a colospeny bag ;,( xxxx

[jojo777]

Laser surgery to burn endo is very old-fashioned as it doesnt take out the "root" of the endo spots. You need proper excision of the endo. x

[jemmadavies88]

Thanks for the reply! From my understanding of what the surgeons have told me is that it will start off key hole but if they have to segment any of my bowel they will have to go to open surgery they are hoping that by shaving and discing that this will remove most of the "roots" of the endo. Im really hoping it will give me at least some relief so i dont have to live on decapeptyl injecction and hrt and pain killers lol

[jemmadavies88]

HI jojo777 they are not lasering this time - they are cutting in to try and remove the roots - have you had this surgery? x

[jojo777]

Yes I had my 2nd lap 12 days ago, they cut and removed all endo, so I'm being optimistic that I will be fine for a long time According to my gynae I'm endo free at the moment and ready to start trying for a baby with my hubby

Best of luck with your op

Jo x

[jemmadavies88]

thats brilliant jojo i wish you all the best!! and please keep me updated on how you get on as will help me hopefully stay positive x

[jojo777]

Thank you and I will keep you informed.

When you say advanced endo you mean deep or just very spread? i had deep infiltrating endo in only one location (but was causing excruciating pain cause nerves were wrapped) , still very sore where they cut as nerves were involved and it will take time to heal.

Will you have surgery very soon? x

[OosengaoO]

Jenna I had part of my bowel removed last November along with an ovary and tube, my insides don't heal that great but that's due to the amount of operations I've had. I was meant to be keyhole but ended up open surgery, unfortunately for myself it hasn't helped, but im just going to try get on with it again. My gynae is really good and put me at ease, don't be afraid to ask them all the questions you have no matter how small you think they are. I'm here if you need to chat.

Senga x

[jemmadavies88]

Thanks jojo surgery is scheduled for December and thank you for your reply senga I'm finding it really useful to hear from other people who have had to deal with the same issues as myself and surgery is very daunting so all the info really helps! After your surgery with your bowel how did you find the recovery and after results? X

[OosengaoO]

The recovery was hard I won't pretend it wasn't, but I have family that took care of me after the surgery. Make sure you have good painkillers at home. I also found a V pillow helped at home to get more support when in bed. I was pain free after the operation till mid January but the pain came back just the same. Hopefully it won't be the same for you. X

[jemmadavies88]

At least i know what to expect and defiantly will make sure i take painkillers home with me when i get discharged! Thanks for all the help x

[yorkshiredancer]

Hi, i'm possibly in the same boat! (always had heavy painful periods- normal to me, but had started with childbirth type pains when going to the loo, while having a period. the pain was so bad i thought i was going to die, passed out twice getting worse each month!) I pestered the Dr for 2 years getting fobbed off with a scan, cutting wheat etc. I finally had a lap in early September. They found endo on both tubes & overies, bladder, ureatha, urtea and bowel. I was told they'd had leave it as removing it would of been too dangerous to my bladder and kidney, and bowel. I was put on 6 months of zoladex to try to shrink it, then they plan to try to remove it at another hospital with other surgens present for the different organs. I haven't enjoyed my time on zoladex, but with 1 more left to have the light is at the end of the tunnel i hope!

I dont really understand much about my endo due to still being groggy after the lap when the gynie came to speak to me. I'd had a word before the lap, i worried that they might not look near my bowel as i had read a few blogs about them not finding endo. I thought i would have a little bit of something there because of all the trouble i was having but i was suprised with all the rest.

Hope your op went well x