Need help with asking the right questions please! Consultant appt tomorrow

Hello ladies,

I have my first consultant appointment since being diagnosed with endo back in September, when I had a diagnostic lap.

The lap showed I have extensive endo, on bowel and pouch of Douglas and also on ureters from both kidneys. Some of this was removed by laser treatment during the lap however the bowel couldn't be done as wasn't prepped for surgery.

Since then I have been on Zoladex for the last 3 mths, I was declined HRT from my GP and so have been struggling with sleepless nights for the last 9 weeks (arrrgghhh!)

I have my appointment tomorrow (Monday) and am expecting to discuss my next phase of treatment.

It would help if anyone can suggest some questions to ask, I have the basics covered but I am anticipating having another op at some point or more zoladex.

I have been pain free on zoladex which is great, but wonder what alternatives I could be offered? I am 39 yrs old and am lucky to have completed my family so do not need my plumbing any longer!

Thanks

2 Replies

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  • I am afraid I have read your question too late to be of any help to you for your appointment today. I am sorry to hear that you have endo especially on your bowel and pouch of Douglas. I was the same as you in that during a diagnostic lap they decided my endo was attached to my bowel and the operation would need to be carried out at a bigger hospital with a bowel team on stand by. My only advice is to think very carefully about any options presented to you. I was offered a hysterectomy but as I was 32 and had not had children yet, my consultant encouraged me to go for a second lap with the bowel team on stand by. Everything seemed to go fine until the day after being released from the hospital when my bowel ruptured. Peritonitis resulted in a very stormy recovery in ICU and HDU, requiring several surgeries, including opening me down the middle, a colostomy, a thoracotomy because a lung collapsed and now an ileostomy. I don't want to scare you or put you off going for surgery or any risky treatments but it's worth bearing in mind the risks are very real. I was naive and thought it would never happen to me. Good luck and I hope your appointment goes well and that you are better soon. xx

  • Thank you for sharing your story with me, I've just been to my appointment and my consultant was brilliant, she outlined the options clearly and I'm now thinking them through over Christmas and going back in January.

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