Stage 4 & POD obliteration

[RooLouise]

Hi all,

Just wanted to come and get some general advice and personal experience please!

I had surgery in Dec 2022 but due to the severity, they did what they could, finished and sent me for an MRI. I have had the results back and have been referred for further surgery to included colorectal and urological surgeons. I was then diagnosed with stage 4 endometriosis.

The diagnosis stated 'deeply-infiltrating endometriosis with large nodules involving the posterior vaginal fornix and tethering the anterior rectal wall. The pouch of Douglas is effectively obliterated and there was a marked thickening of the uterosacral ligaments. Both ovaries and very posteriorally located adjacent to the cervix on either side but there are no ovarian endometriomas and no hydronephorosis'.

I guess I want to know who else has been diagnosed with something similar or can tell me about it more. My fiance and I are planning to start trying for a family next summer after our wedding, however, how much difficulty can be expected (IVF has already been discussed and added to the treatment plan), but I don't know how safe a pregnancy will be/be possible and if so, due to the obliteration, will my pelvic floors be ruined etc?

I guess I want to know what to prepare for and come to terms with not being a parent if it is so risky now rather than the heartbreak that will come with not being able to concieve, miscarriage etc. The plan is once we've had our 2 kids (if possible), then to have a full hysterectomy so should I just have it now and save some pain?

[Sunset-lady]

Morning lovely, all I know is that this disease tends to get worse over time. It may not cause pain later in life but the lesions will be fully established so if you already have stage 4 then I'd recommend starting to try to have children now.