Tag: Ehlers-Danlos Syndrome

At the start of January, I underwent a small surgery.  I’d known for several weeks that I had needed it but due to being pregnant my surgeon wanted to wait until I was safely into the second trimester before we risked putting my body through the stress of it. I am by no means a stranger to surgery; due to my varying conditions I’ve had more surgeries than I care to think about. Whilst I was naturally nervous with all of them, this one was by far the worst. With my previous surgeries, it had always been carried out under a general anesthetic, this time, however, as much as I would have far preferred to be knocked out, I was wide awake and able to feel everything.

My surgeon had made it clear to me from the start that if he could have put me to sleep he would have done, but as it was a quick surgery he didn’t want to do so due to the pregnancy. A decision that I fully agreed with. The complication we faced was that I experience no response to the local anesthetic. It doesn’t matter the type or amount you inject me with, it does nothing. This is down to my Classical Ehlers-Danlos Syndrome. My surgical team and I have a very good relationship, and we talked at length about the possible sedative medications we could use to help me through the procedure; ultimately it transpired that the few medications that were appropriate to use I am severely allergic too. With no other options, I consented to undergo the surgery with no anesthesia or pain relief.

Clambering onto the operating table, staring up at the bright lights above and conversing with the operating surgeon went against everything that felt natural to me. My surgeon cracked joke after joke, trying to keep me focused on anything but the pain that his scalpel inflicted. Having to force yourself to lie steady, and not scream for help whilst someone is cutting into you, to try not to curl up in a ball and cry hysterically is hell. If I hadn’t needed the operation I would not have put myself through it.

I had wrongly presumed that because I can handle dislocations like a pro that this surgery would not be that much harder. Instead, I find myself waking up at night in a cold sweat, gripping my duvet, absolutely consumed with fear. Night after night I go to sleep and dream I am back on the operating table except for this time the pain never stops, the surgeon just keeps cutting bits of me away until there is nothing left.

I am fairly certain that the nightmares are getting worse due to the possibility of needing a c-section in the not so distant future due to a low-lying placenta. Whilst I know if this is the case my team will put me under for the operation, the irrational part of me has still built up a fear of once again being on the table able to feel everything. A position I hope never to be in again.