Survey: Do Endo Patients Regret Excision Surgery?
I finally scheduled a visit with an excision specialist. I'll have to make a 5-1/2 hour drive to get there, so he's already booked me for 3 days. The dates include a consultation, possible surgery, and a post-op checkup.
But the appointment isn't until March, which means I have plenty of time to think about whether or not I want to have excision surgery. You might wonder why I'd skip this gold-standard procedure if I get the chance. Well, I've had two surgeries in the past and they didn't do much for my pain. But they were both ablation, and the doctors didn't check for extrapelvic activity.
If the surgeon suggests it, I'm leaning towards saying yes. I know it likely won't get rid of all my pain, but fellow advocate Jessie Madrigal told me she didn't regret getting excision. And results from a recent survey published in The Journal of Minimally Invasive Gynecology show other people didn't either.1
What was the survey about?
Researchers from the Mayo Clinic wanted to find out the "incidence of decision regret associated with surgery for endometriosis or chronic pelvic pain (CPP)."
How did they conduct the study?
They asked participants to answer two questionnaires, including the decision regret scale (DRS) and the patient global impression of improvement (PGI-I).
Researchers reached out to 253 patients. Out of that, 154 responded to the survey. The average age was about 35.
What were the results?
Compared to non-responders, people who answered the survey were more likely to have stage III/IV endo, more previous surgeries, a higher complication rate, and more lab results that tested positive for endometriosis.
Here's what else they found.
- 137 (90%) agreed or strongly agreed that having excision surgery was the right choice
- 134 (87%) said they would choose to have surgery again (16.3%) reported some regret about their excision
Regret was not associated with PGI-I score, age, time since surgery, number of previous surgeries, negative lab tests for endo, hysterectomy, or complications.
What was their conclusion?
Since the vast majority of participants wouldn't redo their decision to get excision, the researchers think these results show that surgeons can feel OK about offering a surgical option to patients in terms of evaluation or management for endometriosis or chronic pelvic pain.
What the survey didn't say
The survey didn't get into details about what symptoms excision helped with. That doesn't change the overall point of the research. But I hope future studies look to see exactly how excision vs. ablation helps with specific symptoms.
Has intimacy with your partner been affected because of endometriosis symptoms?