endometriosis journey

Excision Surgery Part 2: I Know My Body

We all say it, right? I know my body. I know when something is wrong. I know that something is suspiciously right. When you are sick 99% of the time, you know how your body feels with every sway and every stumble, and every new stimulus. You know all the different kinds of pain: from dull aches to shooting pain; from a 6 to a 9 to a ‘hmm… Im not sure if that’s pain or discomfort”. You know!

On day 10 post surgery something was happening. While I knew that tremendous amount of work had been done to remove my rectosigmoid colon from my abdomen, and subsequently my left ovary from the colon, I still understood what healing felt like. I also knew what an accidental tear or an over-exertion would feel like. It feels like a spike in pain that – with rest and medication – would eventually start to get better over time. This is exactly the opposite of what I started to feel. If you can imagine, the top of your left pelvic bone… go in about an inch and a half, and then hook up a car battery charger right there and press on the gas. Yeah that’s what I was feeling. It was right where an incision had been made, with a dull ache of 6 all day, and shooting voltage at 8 or 9 every 15min or so. First step was to run this by the surgeon who recommended I go get a urine culture done to rule out infection. Done. But the pain persisted with no medications bringing relief. By this point, say day 14, I wasnt even concentrating on the surgical healing, I was 100% focused on this ‘problem’. When I reached out to others on social media I was relieved to hear that it was normal, but that nagging voice inside of me kept telling me this surely wasnt normal.

Finally, I broke and went to emerg. I was given the most high level care from the minute I walked in. OK maybe not the minute I walked in. Maybe the minute the doctor saw me and understood how much pain I was in. But it wasnt the doctor I remember – though he was nice too – but the nurse. She was so caring and understanding of my gynecological issues. She gave me a hot blanket to put around my back, and one to put right on the spot that hurt. And then a shot of hydromorphone to calm be down. I was in bliss for about 20min until the hydromorphone spiked my pain much like I experience with morphine (I believe it’s hyperalgia they call it). They didn’t restrict me from more hydromorphone but the next dose – should I need it – was prepped for half the amount.

Long story short, infection and complications were ruled out by more urine cultures, an ultrasound and blood work. We even ran CRP to see if there was undue inflammation that could point to GI issues, but that was ruled out as well. Home I went. As a patient, you kinda lose your steam after awhile. I lost my steam for about 2 days. I was just so paralyzed with pain, disappointed that the meds weren’t working, and exhausted. But, as usual, to my rescue my doc offered to see me just to assess what was going on. No judgement, no preconceived notions, just a lot of listening and suggesting. We tried the logic that it was nerve related. Either an aggravated nerve due to the innervation of nerves around the surgical site, OR a new nerve pathway sending protective signals despite the removal of the stimulus. This in essence is central sensitization and not uncommon with laparoscopic excision of endometriosis. Doc gave me two nerve blocks, warned me the pain may get worse before it gets better, and then chatted with me about the findings of the surgery.

No endometriosis is still worth excision surgery.

I write this because time and time again I have had women reach out to me in tears, saying their worst fears came true: that the surgeon was not able to find any endometriosis and they feel like failures. Only a doctor can make you feel like a failure by giving you the notion that the surgery – the lap – was a waste of time. But as medicine and science go, we usually can only rule out. We dont rule in. So by enduring biopsies and the exploration through laparoscopy this is still a major milestone in your journey.

When I sat down to go over the findings, I was shocked (and relieved) to hear that the pathology for the biopsies from the left side (the side stuck to the colon by adhesions) was negative for endo, as were the various unusual spots taken from my diaphragm. Let me repeat. There was no endometriosis on my diaphragm. I would have expected this to make me feel mad, or sad, or something… But it didn’t. Because my surgeon told me we did everything right, and that for any residual pain We can rule OUT endometriosis but that still lends the way for other professionals to start taking a stab at hypotheses. This is exactly what your surgeon should be saying to you. This is exactly what your team of specialists should be reassuring you of. It’s never over, until its over.

All in all a great day!

I just hit the 4 week milestone, and I am feeling very optimistic about my recovery. One thing we did happen to modify during that last visit was swapping out gabapentin for amitriptyline which has been causing dizziness as expected, but otherwise, I even baked some cookies last night :).

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