The Recurrence of Endo

In the summer of 2017, at age 24, I traveled to The Center For Endometriosis Care and had the biggest endometriosis surgery I've ever had. I had a hysterectomy, excision of endometriosis, and a thoracoscopy for thoracic endometriosis.

My surgical success

Simply put, the surgery was incredibly successful. Though the recovery was challenging, as can be expected, within 6 months I was starting to feel like myself again. I could gauge my progress by the fact that I was going out more, using my heating pad less, and able to work a part-time job. I could even have a few alcoholic drinks for the first time in 3 years without my pelvis feeling as if it was wrapped in barbed wire. But one of the most incredible things I noticed was the feeling I got when I began saying that I was in remission; It felt more powerful than I could have imagined it would. These simple words meant something larger than life after living so long with a disease controlling everything. Endometriosis was finally completely non-existent and I could physically feel it's lack of presence.

Worrying about recurrence

In the past 3 years since the big surgery, I did need a pelvic surgery a year later. I was having pain again and was nervous it was endometriosis, though my surgeon suspected adhesions. And thankfully, he was right. It had intertwined my bowels, bladder, and cervix and adhesed my ovaries to my abdomen. When I woke up from anesthesia, my surgeon's assistant was smiling and joyfully said, "We didn't find any endo!". At this moment, I felt more relief than I had ever felt. Before I knew it I felt like I was getting back on track again. I had a whole year being disease-free under my belt and the worries of it returning sort of dissipated.

Then fast forward to present day and I am laying down typing this while reflecting on a horrible month. February was filled with endless hospital visits, scans, and a heavy weight of anxiety. Unfortunately, I have been having painful flares for the past few months. Without digging too much into the details, my surgeon ended up finding a large amount of endo on my MRI. Endometriosis can't always be seen on an MRI, but because of the size, he could. This being said, I could have more that is smaller because a lot of the time it is microscopic. We also see something has rotated my intestines, so someone like me with a long history of bowel endometriosis, my heart basically sank.

Mixed feelings over ANOTHER endo surgery

I have surgery in April, a surgery I have had 7 times now. The giant surgery I had 3 years ago left me $100,000 in debt. I looked at it like a "life changing surgery" and in ways, it was. But in other ways, I see myself back to where I was a few years ago. The pain, missing work, unable to leave the house, and being terrified of living in my own body. So I am allowing myself to feel feelings of disappointment and anger. My disappointment lies in the fact that I have an illness that is chronic and though some don’t have endo recur after excision, I do. I am angry and heartbroken that the only gold standard treatment we have is not only inaccessible and expensive, but doesn't work for everyone. And I’m reminding myself that I’m also not the only one alone in this. That's why I’m writing this article. It's for those like me that thought they hit a rock bottom with endo and then ended up having another rock bottom.

As I prepare for the next few months awaiting surgery, I'm working hard to be kind to myself. I'm trying to take a step back and let my body and mind rest while I go through this health set back, but it's hard. Years in remission made me forget how deeply sick my body has the potential to get. My mind has seemed to forget that anything can happen when a horrid disease has the power to grow wherever it pleases. All this being said, I am trying, so G*d-D*mn hard. I know all of you are trying too. And at the end of the day, I will continue to advocate as best I can for us, in remission or not, for better treatments, so there will never even be a rock bottom to hit.