“The trouble with chronic pain is that it is so easy to become accustomed to it, both mentally and physically. At first it’s absolutely agonizing; it’s the only thing you think about, like a rock in your shoe that rubs your foot raw with every step. Then the constant rubbing, the pain and the limp all become part of the status quo, the occasional stabbing pain just a reminder.

You are so set to endure, hunched against it – and when it starts to ease, you don’t really notice, until the absence washes over you like a balm.”

Robert J. Wiersema

A year ago a surgeon changed my life. His bedside manner was a little brisk, but his expertise and willingness to listen earned my trust. Only now have I realized the impact my surgery has had on my body and my life.  On 10.24.2019 I had endometriosis excision, a hysterectomy (only kept ovaries), salpingectomy, and an appendectomy all at once.  I had been in chronic pain for over three years and had undergone 1 major surgery and 1 minor surgery in the 13 months leading up to this procedure.  

Prior to October of last year, I was exhausted, consumed by my pain, isolating myself, and feeling hopeless. I was not sleeping very much, had daily hip and back pain, and monthly abdominal and pelvic pain. I was hopeful that another surgery would help, but had learned from previous experience not to expect that this would have a huge impact.  Having my pain dismissed by over 7 doctors and my previous surgeon (and seeking treatment in two different states) had turned me into a pessimist (even more, lol) and I realize now that I was on the brink of falling into a major depression.  I was teetering at the edge. 

It is ironic that my three years with chronic pain had prepared me for living through this pandemic. Life is not that much different. We don’t make a lot of plans, I had gotten used to the solitude of canceling plans; as the prospect of sitting in an uncomfortable chair for even five minutes sounded exhausting. What is different now is that I want to have plans and see people (when we can’t!), I have been cooking from scratch, I have become a lot more physically active, I have taken up hobbies again, and I no longer feel hopeless about the physical state of my body. 

I am grateful I have a wife that was willing to travel with me out of state at least 5 times in order to find a doctor who could help me, even though we really did not have the money for travel expenses, multiple Airbnb and hotel stays, and time off of work.  She was patient with me, as I am sure I was not the easiest person to live with. Thankfully my surgery was covered by insurance and I did not have any surgical complications.

I have had some unexpected grief come up surrounding the permanence of not being able to have children biologically, even though we have decided not to have children. I did not expect the finality of this to affect me as much as it has emotionally. (I have found big decisions like this hard to make because I struggle over choosing the right decision and not messing it up).   I have found this to be true in other instances of grief, that the absence of possibility is very hard to accept.  That the option to change my mind is no longer available. Even with this grief, I do not regret my choice to have a hysterectomy. I know that it was the best option for me and I have reassurance of this decision everyday with the way my body feels. And also every month, lol.  That has been AMAZING and life changing.  It is like a little victory every month and feels like a prize I have earned. I wear my scars with pride. 

It is astounding to me that at least 1 in 10 women have endometriosis and there are less than 100 doctors in the US who know how to treat it effectively.  Of those 100 doctors, few are in network with insurance. This enrages me and has continued to make me vocal about endometriosis and become an advocate to anyone I know who needs to figure out how to receive effective treatment.  

Although I am not entirely pain free, I am 98% sure that my endometriosis was effectively treated and my current back and abdominal pain is caused by my hypermobility and not endometriosis.  I have been going regularly to physical therapy (well, minus a couple months during the pandemic) and am having to relearn how to hold my body when sitting and standing due to the laxitisity of my muscles and the toll that being in chronic pain has caused on my body. I no longer immediately panic that my endo is back when I have bouts of chronic back pain thanks to relief after physical therapy, although the worry hovers in the back of my mind. I don’t think this worry will ever completely leave my mind, as endometriosis is a chronic condition and can (although rare) come back after effective treatment. 

I am hopeful that this surgery and changes I have made in my diet and environment (paraben and sulfate free products for house and beauty), along with physical therapy and keeping up with my exercises will continue this upward trend in my pain and overall wellbeing.