Answer Summary

Members confirmed that endometriosis can absolutely persist or return after a total hysterectomy, with several sharing personal experiences of... Read more

Members confirmed that endometriosis can absolutely persist or return after a total hysterectomy, with several sharing personal experiences of recurrence ranging from one year to nearly a decade after surgery, and some discovering endo had spread throughout the abdomen despite removal of reproductive organs. Many discussed the complex challenge of hormone therapy, with some doctors recommending progesterone-only medications like Visanne to prevent regrowth while others advised avoiding hormones altogether, leaving members caught between conflicting medical advice and the reality of managing pain. A recurring theme was the frustration of being told a hysterectomy would solve the problem only to find the disease returned, along with encouragement to advocate fiercely for proper care, seek specialists who truly understand endometriosis, and explore all pain management options including clinical trials.