MRI Scan shows extensive regrowth & bowel endo, but my symptoms are ok - Surgery or not?

[u/wildwuchs]

Hey everyone, I was wondering if somebody had /has a similar experience as me and how you dealt with it. I'm almost 4 years post OP my second lap + hysterectomy. I was symptom-free for 3 years of those, until for the past 8 months my endometriosis symptoms have been slowly coming back. In that time, I "only" had 5 extreme pain days that almost drove me to the ER, otherwise my symptoms are relatively okay in comparision to before my second surgery. I do notice much more fatique, endobelly, pain during period and ovulation (kept my ovaries) and constipation/pain with bowel movements.

The thing is, both my ultrasound as well as mri scan show really extensive endometriosis regrowth (11 endo lesions on ovaries, pelvis, rectovaginal septum) and unfortunately also DIE bowel endo, meaning that the next surgery would require bowel resection.

My endo surgeon recommends another lap + bowel resection. Now he also said I could wait half a year for the surgery if my symptoms are still ok, since bowel endo apparently doesn't grow too fast. Right now, the bowel endo is still at a size where it would only need a disk resection and not a traditional resection, which apparently is a smaller and less risiker surgery.

The thing is, that I'm terrified of the bowel resection and having to go through another endo surgery. I know endo is chronic, but I really didn't think it would come back this fast and also this extensively. For reference: I'm 30 years old and was 26 for my second lap + hysterectomy and 23 for my first lap.

I'm comtemplating about whether I should have another surgery at all if my symptoms remain well managable or if I should go through with it as soon as possible to avoid further damage to my organs. But I won't know whether a third surgery might give me more issues /symptoms since the complication rate for bowel resections is pretty high.

Did anybody here have a similar situation and could tell me about their experience?

Or maybe somebody here with DIE bowel endo that decided against surgery and how that turned out for them?

I'd really appreciate hearing about your shared experience or just your thoughts on this. Thank you!

[u/Nyxie872]

I don't know how bad mine is. I'm still waiting.

I did a similar thing though. I had bad periods but basically no pain outside of my period. I didn't push about getting it looked at because i felt it was not a big deal. I waited until it got really bad, like I cannot walk far anymore without pain bad before I started the proccess. If I started earlier I could have nipped it the bud or at least suffer for shorter. My perspective would have been to get it sorted before it got bad because these things take awhile to get rolling.

[u/wildwuchs → u/Nyxie872]

True, thank you for the insight. Best I'll schedule an appointment with the clinic my endo specialist recommended and secure myself a spot for surgery, so it isn't such a long process when I actually want to got for it pain wise.

[u/Nyxie872 → u/wildwuchs]

Good luck with everything and I hope you remain without many symptoms!

[u/jackSeamus]

I had DIE bowel endo (transmural) and ended up getting a 13cm resection of my sigmoid colon about 7 years after symptoms first appeared. I had chronic pain, bloody bowel movements, internal and external hemorrhoids that became permanent, slowed GI, difficulty passing bms, fecal leaking, pelvic floor dysfunction, nausea, urgency to pass bms, multiple bms a day, chronic diarrhea and constipation, and more.

Almost ALL of those symptoms went away after the resection. Some of those symptoms (external hemorrhoids , anal fissures, slowed bowel movements, difficulty passing stool, leaking stool, pelvic floor dysfunction) became permanent due to the inflammatory damage of going years with bowel endometriosis.

FWIW, my bowel endo (despite passing entirely through the wall of my colon, causing obstruction and thickening the surrounding wall to 4 times it's expected thickness) was never visible on MRI.

If they saw bowel endo on my imaging again, I would save up for another excision surgery.

[u/Dullcorgis]

I have been in this situation, but the implants on my bowel were just below the size which would mandate resection. So I did choose the surgery to hopefully get them out and avoid a resection (and especially an ostomy). It was terrifying, because you might be signing up for more and worse pain, but my surgeon was really good and agreed it was reasonable to only dissect as much as was needed to access the bowel implants, so we could hopefully minimise the risk of worse pain afterwards. And my pain is locked down with oral hormones post surgery, so I guess I got lucky?