Chapter 16: Post Op Anxiety

There is no cure for endometriosis. It can be treated by a skilled surgeon with training in endometriosis excision. The pain that remains after surgery can be addressed by a pelvic floor physical therapist. Some patients have luck treating their symptoms with hormonal birth control and other pills (I will dedicate at least another entire blog post, if not several, to that later). However, even with all of these treatment options, it is not curable. It can even grow back after being excised. There are conflicting reports about what the chances are of endometriosis growing back after surgery. The consensus seems to be that it entirely depends on the skill level of the surgeon. My surgeon said the chances on average were about 33%, but I've seen the range at anywhere from 5-40%. If anything, this just proves that there needs to be more research into the disease. My surgeon said he was "confident" that it wouldn't grow back, but if I felt the symptoms coming back that I should give him a call. I already have someone who believes me, which is huge and very uncommon in the endometriosis community, and he would be willing to do surgery again. He told me to trust my body and be aware of my symptoms.

However, now that I'm almost completely healed from my surgery, anytime anything feels off I immediately spiral, convinced that the surgery didn't work or that it's grown back already. For example, sciatica pain is very common among endometriosis patients. My sciatica has been acting up for the last week. I know that for me, if I'm not exercising regularly, it will flare up. My dad had hip replacement surgery a week ago and I've been unable to leave him alone. As a result I've been house bound and not going to the gym or for walks. Is that what's likely causing my pain? Yes. Is that the first thing that came to mind? No. I had horrible pictures of endometrial tissue growing around my sciatic nerve and more surgery in my near future. I hope this is something that becomes less frequent as my body and mind starts to heal. I should probably find a therapist that deals with people with chronic illnesses so that I can learn some coping mechanisms.

As bad as the physical pain has been, the mental and emotional pain is almost worse in a lot of ways. It's very isolating being in so much pain all of the time, especially when it's dismissed as "bad periods." The damage that uneducated doctors are doing to women with endometriosis goes far beyond the physical pain. By dismissing their endometriosis symptoms, they're telling them not to trust their brains and their bodies. That can spill over in to every aspect of daily life. It's such a huge detriment to people with uteruses that endometriosis is not widely taught in the medical community. I know several other people with endometriosis and the common issue that we're all dealing with is the after effects of being dismissed for years.