Bowel endo surgery

[anonnads]

I was diagnosed with endo via lap four years ago. At the time i had an endometrioma removed but they left some endo (including a nodule) on my left uterosacral ligament as it was too close to the ureter. I also had mirena fitted at the same time and discharged straight after the surgery. Although there was improvements to my symptoms, the pain had not resolved so i was referred back to the endo clinic.

Surprisingly, I went back and I soon found out that the surgeon did not document what endo she left behind despite telling me. So the doctors were like what nodule? MRI was done and nothing was seen so for three years i was told i had 'no active endo' and that they would not offer me surgery. They offered a telephone appointment once a year instead. So i requested my records (including surgery photos and managed to get some help to interpret them).

After three years, I spoke to a trainee who strongly recommended against surgery but finally acknowledged the existence of the nodule that was not removed. This led to the MDT agreeing i should be offered surgery. This brings me to two months ago where i had surgery and the nodule was there (relieved i wasnt crazy!). However, I now have multiple nodules on my rectum tethering the uterus and being pulled to the right uterosacral ligament. So they have still not removed any nodules as they want the colorectal surgeons to supervise as i may need a stoma.

So the next surgery will be my third operation. I am 28 right now and I am not in a relationship/not sure if i want kids (but would like the option). I am just now thinking that maybe i should wait and have it later (especially as this progresses and to minimise the number of surgeries). Just wondering if anyone has had a similar experience or has any advice?

[Marcia71]

the main reasons for surgery are pain or fertility and as you say the latter isn’t a concern right now it will depend how bad your pain is. You could opt to have yearly scans to monitor progression and decide when to have surgery if it does progress or pain gets unbearable.

So little is known about how endo progresses. That it’s impossible to say what may or may not happen with the nodules. Even severe endo can effectively stop growing and not cause more problems. But it also can keep progressing and destroy organs. So that’s why as a minimum yearly scans should be considered.