Living with a Time Bomb

A couple of years ago, I had a hysterectomy. You can read about the reasons why I chose a hysterectomy here. I don’t regret the decision, especially since it was subsequently discovered I also had adenomyosis. But I have been lying to myself ever since. You see, I keep telling myself my endometriosis is gone. I no longer suffer from it. And that is true. I no longer suffer from pain or strange mood swings, and I definitely no longer have periods. The lie is that this is going to be permanent. It may be, but it may not be.

There is no cure for endo

There is no cure for endometriosis. That is the cruel truth. You can treat the symptoms by hormones or diet, or you can attack the endometriosis itself surgically by excision or ablation. I had excision surgery ten years before my hysterectomy and that kept the endometriosis at bay for about five years. I also had excision surgery as part of my hysterectomy, as my hysterectomy was performed by an endometriosis specialist.

"Will my endo come back?

While excision and hysterectomy, when performed together, are effective surgeries to keeping the endometriosis at bay for a while, there is no guarantee that the endometriosis will never come back. I may be fine forever, I may be fine for another ten or twenty years, but it is equally possible that the endometriosis will invade my body and make me miserable in a year or two. There is no knowing what will happen. It’s like living with a time bomb.

Dealing with the truth

It can be hard to live with that realization. Endometriosis wrecks lives, and after surgery, you get a taste of what life can be like without endometriosis. The relief of not being in pain every day, of not having to dread your period. The knowledge that this relief can be snatched away in an instant by recurring endometriosis is devastating. Which is why I generally don’t think about it. I ignore the inconvenient truth that endometriosis is incurable and try to enjoy my life now as much as I can.

People who are not suffering from endometriosis often have a hard time wrapping their heads around this. They assume that, "because you had surgery, you are cured". My husband assumed that after my first surgery all my problems were solved. Men are like that – they like to solve things. He was horrified to learn that my endometriosis wasn’t cured, it was just lurking deep inside my body, waiting for a chance to emerge again.

How to cope

Living with a time bomb is hard. Most days, I don’t think about it. Some days, I delude myself that because this last surgeon was an endometriosis specialist, my endometriosis will not come back. But on days when the realization hits me hardest, I come to this place, seek out others who are in the same boat. Because we are not alone. Sadly, there are many women who suffer from endometriosis – far too many, with no cure in sight and hardly any research on the way. This is also a blessing in disguise, though, as there is a large support network of women who know what we are going through. And for that, I am grateful.