Zoladex prior to pouch of Douglas surgery? - Endometriosis UK

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Zoladex prior to pouch of Douglas surgery?

MyStar86 profile image
4 Replies

Has anyone been told they have to do 3 months on Zoladex prior to surgery on the pouch of Douglas? Mine is deep penetrating endo and the surgeon told me today that he wants me to do 3 months on Zoladex before he can do the surgery as jt is too dangerous to remove before. He said the Zoladex would shrink the cells making the surgery less invasive as he was talking about having to resection the bowel. I wasn’t told this before so this is new I told the endo specialist already that I didn’t want to do Zoladex again (before I had spoken to the surgeon) and he was all ready to book in the surgery getting me sorted with the bowel prep etc so I’m very confused now being told I MUST do the Zoladex first. Has anyone else been told this?

I have osteoporosis so I’m really worried about the Zoladex given the impact that has on bone density when I already have osteoporosis. I haven’t told the surgeon or the endo specialist about the osteoporosis because I’m worried they won’t operate and I need the surgery…just confused now as I didn’t expect to have to go through the Zoladex again.

Any advice would be helpful especially if having the Zoladex isn’t set in stone which the surgeon certainly made it sound like it was today.

Thank you I’m just very confused xx

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MyStar86
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Lindle profile image
Lindle

I assume you are at a specialist endo centre as you should be.

There is no evidence that these injections prior to excision have any benefit in terms of surgical outcome. They don't shrink endo cells they just reduce inflammation and blood. There are two schools of thought on this - some surgeons prefer it as they claim it makes surgery less messy while others feel that the dampening down of inflammation can lead to endo being missed. This is discussed on page 48 of the ESHRE guideline:

'Conclusion and considerations

The role of preoperative hormonal treatment has been assessed in a Cochrane review that concluded that there was no evidence of a benefit of preoperative medical therapy on the outcome of surgery. This conclusion is shared by the GDG, but it also acknowledges that in clinical practice, surgeons prescribe preoperative medical treatment with GnRH analogues as this can facilitate surgery due to reduced inflammation, vascularisation of endometriosis lesions and adhesions. However, there are no controlled studies supporting this.

From a patient perspective, medical treatment should be offered before surgery to women with painful symptoms in the waiting period before the surgery can be performed, with the purpose of reducing pain before, not after, surgery.'

eshre.eu/Guidelines-and-Leg...

So you should only be offered them to reduce pain prior to surgery if you want them which clearly you don't. This is a surgeon choosing what is preferable to him rather than following your wishes. It is absolutely your choice. The only recommendation to have them prior to excision is when endometriomas are involved in which case endometriomas should be stripped out at a diagnostic lap with a recommendation of 3 months GnRH agonists prior to the main excision. But again ultimately it is the patients choice and in the current situation with Covid delays I doubt whether this 2 stage surgery 3 months apart is possible in centres right now. This is covered in the NHS England treatment specification for severe endo at page 7 under 'Inpatient surgical spell'.

england.nhs.uk/wp-content/u...

If a surgeon insists on this then they are likely to only be familiar with this way of operating so it would be best to request another lead surgeon at your centre if there is one who will do it without or choose a different endo centre that will take account of your wishes.

MyStar86 profile image
MyStar86 in reply to Lindle

Wow you are amazing and how do you know so much about it all? I had no idea where to look but I’ve now printed the pages that you quoted and I will be taking them in with me to see the endo specialist on Monday. I am with the endo Center specialists but I’ve gone private so there isn’t even any wait for surgery they have now just suddenly added thus Zoladex request on which has thrown me. It was the surgeon that told me yesterday and it just doesn’t make sense.

I initially had my laparoscopy with my original gynaecologist who isn’t an endo specialist and he treated the endo in pelvis and ligaments but was unable to treat the rectovaginal endo so I was referred on to the endo specialist and the rectal surgeon.

I’m just scared they will say I can’t have the surgery without it but they know when I tried the Zoladex before I lost the plot and could hardly even walk from the back pain i counted down the days till it was out my system wnd even asked if I could get the implant removed 8 days after my first injection so I have no idea why they have now decided I have to have it……

I will find out more on Monday I guess just scary having my life in doctors hands as I need the surgery due to the pain and unbearable gastric symptoms I have with it but I’m so scared of the Zoladex :(

Thank you so much it means a lot to have your detailed response!!!

Lindle profile image
Lindle in reply to MyStar86

You are very welcome x

Gwills profile image
Gwills

I was put on zoladex for 4 months and it had absolutely zero effect. In fact my ovarian cyst came back twice more (had another surgery in between). I suffer with bone density issues and was reluctant to try it, but was at the point I would try anything to see if it helped. It shouldn’t be something you are made to have before surgery so don’t let them bully you into it! Good luck with it all and I hope you get some relief soon.

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