Worrying about The Return of My Endometriosis

It’s been a year since my last surgery. My surgeon used both ablation and excision to remove all of my endometriosis, from my bladder, ovaries, and around the sacral area. The recovery went as expected: I had to be in bed for more than a week, take care of my stitches and sleep like the happiest of puppies. It took me almost three weeks to be able to walk around and get my independence back.

Then, rather unexpectedly, three months after the procedure, I had a couple of periods that barely hurt, and it was like my life had changed completely. I remember thinking, "This is how people with no endometriosis live!". No weeks wasted in bed, no copious amount of painkillers, horrifying flare-ups, or blood-stained clothes. I was so happy and full of hope for the future.

Two steps forward, ten steps back

Then, as months went by, my periods regressed to the usual horror show. In addition to that, some new symptoms appeared. I now suffer from a random sharp pain in the area around my right ovary. It is sometimes so intense that it prevents me from walking. It can last for hours and saps all of my energy. My doctor believes it’s either scar tissue from the surgery or new endometriosis adhesions. Yet only a laparoscopy could give us a definite answer.

Endometriosis surgery is a bit like a catch-22

It’s quite an invasive procedure, and just like with any other surgery, it involves the formation of scar tissue during recovery.¹ For endometriosis patients, this is the biggest irony. Our insides are already affected by adhesions and scar tissue, and surgery can be the thing that creates more of that. Also, because there is currently no cure for endometriosis, any surgery can just be the first of many.²

Looking ahead

I don’t regret my surgery. I was suffering enormously and my illness was limiting my life. Before the procedure, I would spend three to four days in bed. This has now been reduced to one day or two. Most of the unpleasant symptoms, like daily nausea and painful intercourse - massive round of applause please - have also been lessened or eliminated.

However, the truth is that my endometriosis may have returned, or it may do so further down the line. My future may involve more surgeries. Some days, I get upset by the never-ending nature of this illness. Others I just accept it, make a joke or two, and move on to something else. Overall, I know I am OK. I am aware that my illness is chronic, and it is here to stay. My life is about managing this illness, and developing a set of tools that will allow me to function like everyone else. And I have become quite adept at this.

I have to carry on doing the things I do that actually help me, like eating appropriately, exercising, and listening to my body. If the endometriosis does return, I will be more than ready to deal with it.

*Does this advocate's experience resonate with you at all? We would love to hear your experiences, thoughts, and stories in the comment section below!*