Help! Consultant appt brought forward....

[MJD1712]

Brief background, I had my 2nd laparoscopy on 31 August. Big fibroid squashing everything and stage 4 endometriosis....couldn't do anything because fibroid taking up so much room. And worry is endo infiltration of bowels. Pouch of Douglas 'obliterated'. Doc mentioned hysterectomy which freaked me out. Mostly because it seemed so final and thought I hoped I would have a few more years for menopause (I'm 43). Had IVF and miscarriages....no energy to carry on trying. Endo (and probably fibroid) cause quite a lot of issues each month (nausea, dizziness, pain and discomfort generally, sore hips and lower back (which causes lack of sleep), discomfort and often pain when i go to the loo). Particularly in the week or more before I come on and then when I have my period. I have questions about what would be best long term. Also being referred to endometriosis specialist but not had that yet. Is there anything anyone recommends I ask or think about? Appointment is tomorrow!! Thank you lovely people!

[GraceFace]

Hiya, that’s an awful lot for you to think through and process. I’d ask how urgent the need is for a hysterectomy, and whether they would remove all of the parts I.e ovaries as well as womb? I wonder also if there might be a chance for you to freeze some eggs first (if you want to). I’d also write down your questions in advance, as it’s easy to forget to ask things or mention concerns. Best of luck x

[MJD1712 in reply to GraceFace]

Thank you so much. Good ideas x

[Avourneen]

I would ask :

what is most likely to stop the endo coming back,should I have ovaries removed not just hysterectomy (this usually stops it coming back)?

They should see bowel involvement on MRI, will you need two surgeons (it's not normal for a gynae to remove bowel endo alone they usually have a bowel surgeon too)?

can they see any adenomysiois ? (that causes a lot of back pain).

Can they recommend anything for the pain in the meantime?

Can they remove the fibroid at the same time as everything else?

How long will my recovery time be?

What are the risks /possible complications?

What are all my options?

I can't think of anything else but sure there are other things.

Good luck

[MJD1712 in reply to Avourneen]

This is amazing thanks so much x

[Sunset-lady]

Ask them what they'll do if your cervix is fused to your bowel. Don't let them tell you that this is rare as it's not with endo. You may need a bowel surgeon in there. I'd leave your ovaries as they secrete small amounts of hormones for a very long time. Do some research around this before you decide. Good luck. I have 5 fibroids which are currently ruining life so having them out would be a blessing x

[MJD1712 in reply to Sunset-lady]

Thank you really helpful and sorry to hear you're suffering. I hope you get some relief soon xxx