Last year in June, I had a laparoscopy and ablation surgery. Following a successful recovery, I was still in excruciating pain. I then did extensive research to find one of the best doctors in my city, and begged my GP for a referral. Then I waited 6 months to get my appointment. Upon seeing my endometriosis specialist, she recommended a couple of different treatments before resorting to surgery, all of which I tried – and all of which failed me. I continued to live in excruciating pain. Some of the treatments, including the nightmare drug, Lupron, made my pain worse. When I was given this drug I felt (and walked) like an ailing 90-year-old woman. But, I soldiered on because I knew that at the end of the road, I would get my much-needed excision surgery.
The Gold Standard.
The surgery that all endowarriors hunt down with the hopes of living a normal pain-free life.
To describe my situation a little bit, because of endometriosis, I live in excruciating abdominal and pelvic pain 24/7. No pain medications, including opioids, help. It doesn’t even really take the edge off anymore. My only hope at living a normal, potentially pain-free (or at least less painful) life is excision surgery.
This is the only thing that might help me. At only 27 years old, I look perfectly healthy, yet I can barely walk due to this pain. I have an accessible parking permit – at 27. I can’t go grocery shopping. I cannot walk my dog. I can barely ascend/descend staircases without assistance. I wake myself up in the middle of almost every night and every morning with my own horrific screams from the pain. Sometimes I don’t realize it’s me that’s screaming.
On a day when my pain levels were hovering around a 5/6 on the pain scale (this is a good day), I managed to make it out to Ikea. One of my favourite stores. They don’t do well with online shopping, so I have to go there in person if I want some luxuries like home decor, bedding, or new plants. Neck deep in the store, I was delighting in the throw pillow covers when a pain attack hit. I heard myself gasp in pain – tried to stay quiet so I wouldn’t draw too much attention. I grabbed a shelf before I collapsed in pain. It felt like someone had grabbed my left ovary and thrown it into a garbage disposal. I was seeing stars as my boyfriend tried to figure out what was going on. I panicked when I realized how far I was from my car, parked outside the store in one of the few handicap spots. This is my normal.
On June 1 2017, I was finally approved by my endometriosis specialist for a laser excision laparoscopy. It felt like Christmas. I had waited and fought for so long – I’d won.
I completed the pre-op on June 29th, a week before my surgery. At that time, I was told that I would need a med consult, and I would receive a call with an appointment on the same day. I never received that call, but I thought nothing of it – I figured if they didn’t call me, they had sorted out the issue on their end and all was fine. With my very extensive experience with doctors and hospitals, I have learned that if they don’t call you about an appointment, you’re fine.
I spent the next week getting everything I would need in order. I picked up groceries, I did my laundry, I cleaned my house, I packed my bag. I hurt my body so badly by doing all of these things in the span of only one week, that by Thursday I was barely walking. These were chores I would typically spread out over an entire month. I sat on the floor of my tub in the shower because I could no longer endure the pain of standing: just so that I could shower. But I wasn’t worried about that because I knew by Friday, I would be having a potentially life changing surgery that maybe I would be able to be normal after, and be able to do these things again without repercussions to my body, like most normal 27 year olds.
On July 6, I was due to receive my operating time, as per protocol. I never received this phone call, so later in the day, I contacted the hospital’s pre-op admin, at which time I was told that my surgery was not on July 7, but on July 18th instead. When I asked why, they said that they had no notes, could not see the July 7th booking, but that my surgery was on July 18th. The hospital would only tell me: speak to my doctor, they changed it. My surgery date was re-booked with NO contact made to me – no attempt to contact, whatsoever. I found out the day before. The Grinch stole my Christmas faster than I could have imagined.
I spoke with my doctor later that day, at which time she said it was the first she had heard of it, and would do whatever she could to squeeze me in (she’s just wonderful). The next day I heard from her admin, who said that it was actually the hospital who cancelled my surgery. They had no available med consult appointments, and now my July 18th surgery has been cancelled completely, and she “may” be able to get me a date on August 24th. In short, I was cancelled because of red tape.
August 24th. It feels like it may as well be a year away. I am crushed.
I received news the DAY before that I wouldn’t be having this life-changing surgery that I had planned so meticulously for over the last few weeks. Then I received the news that my surgery wasn’t going to be 11 painful days later – it was going to be almost 2 months later. No effort to fix things, no apologies, no compassion, no understanding, no squeezing me in. No relief from the 24/7 pain I’ve been in for over a year. How could someone understand, when they don’t live a life of pain? I don’t think it’s possible unless it’s your nightmare, too.
I cannot put my devastation into words at this point. My heart just hurts. I see stories of girls on my endo groups in Facebook who’ve had their laparoscopy and I just wish so badly that it was me. I wish that it was that easy for me, too, to get the surgery I so desperately need. I’ve been fighting for so long. I don’t know how much fight I have left.