Endometriosis UK

Endo in the Bowel - treatment - please help

Hi, really hoping someone will help

Anyone had endo in the bowel? What treatment did you have? What worked

My endo has now been found inside my bowel following scopes this week, I also have endometriomas . My gyne wants to move to Zoledex (worked before) without doing another lap (it's been 5 years since my last one m and symptoms are returning post pregnancy and breastfeeding)

I'm sure I read they should do a lap, remove what can and then treat to stop regrowth?

I'm out of options on medicine front it's Zoledex or nothing (unrelated condition prevents taking things like the pill) but would mean stopping feeding and with strong family history of early osteoporosis I'm worried about taking it again but just wanting some help so I know if a second opinion is needed

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Are you at a BSGE specialist endo centre? If not I strongly suggest that you get a second opinion from one straight away.

Zoladex is not a cure it will at best just buy you time. I would ask for a bone density scan before agreeing given your history and you've I had one round already. It is best practice to have a baseline scan before you even start but few places bother.

With deep infiltrating​ endo, especially if it's gone inside your bowel you must be seen at a BSGE centre according to the NHS contract. This is because their surgeons have extra training in specialist excision surgery. If it were me I would want to know what my surgical treatment options were. And what the prognosis is if no operation is done.

I have endo on my bowel attaching it to my cervix. I am having an excision op to remove it to avoid risk of it penetrating inside my bowel in 3 weeks time. The longer you leave it the greater the risk of needing bigger surgery to your bowel.

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Thank you for your help and reply

I'm not at a BSGE specialist centre, I'm seen privately but my consultant doesn't originally work in one either .

I've asked for a bone density scan which he said he would arrange but that it would not impact treatment course and not too delay but I agree I think that's critical

I will be sure to get referred to a specialist centre and get their thoughts asap

Thanks again, really appreciate the reply

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Just glad to help. my first ( private) general gynae was all too keen to operate when he wasn't accredited and I'm very grateful for this site and the endo revisited fb page for having pointed me in the right direction for most appropriate care before I'd gone under the knife.

The list of centres is here and surgeons are named. So far as I know most operate privately to the same standard. But you'll need to investigate. Trust your own research and judgement.

If you tell your insurer that it is in the NHS cotrract that those with infiltrating bowel endo must be seen in these centres you should not have a problem getting authorized for a second opinion as you are receiving worse care than you would in NHS albeit quicker.

bsge.org.uk/centre/

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