On October 8, 2019, I was rolled into the operating room it’s Northside Hospital in Atlanta, Georgia, for the biggest surgery I’ve had to date.
To get to this room, however, was twenty years in the making. Since March is Endometriosis Awareness Month, I decided to create a three part blog series to provide updates, information, and where I am currently at today.
This part is all about what happened after I sent my paperwork to The Center for Endometriosis Care until the day before surgery.
I’ve written several blogs about my experiences with endometriosis: what endometriosis is, the symptoms and effects, and my struggle from age 12-30 is HERE
You can also read more about how endometriosis effected me, how I was diagnosed, and the results of my first and second surgeries HERE
For good measure and hopefully to provide some sort of coping mechanism for someone, I have also written about the tips and tricks I learned along the way to attempt to manage my symptoms HERE
My stories and experiences all led me to the operating table in Atlanta, but I feel I should start where I ended my last blog; by divulging what happened after I sent those 90 pages of medical history, personal accounts, prior surgery photos, and paperwork to Dr. Ken Sinervo at the Center for Endometriosis Care.
The turnaround time was surprisingly quick, especially considering FedEx misdelivered my package (that got handled quickly after a few phone calls of me in a panic, that’s a LOT of personal information to go missing).
Dr. Sinervo himself called me directly, and said the words that have never made me feel more relieved “We can help you”. I think I started crying just hearing that, but composed myself to listen to everything he had to say.
Based on my prior two surgeries, it was very evident that I definitely had endometriosis, but it’s continuous causation of intense pain meant more needed to be done. I was given three options:
- Laparoscopic excision – a no brainer here, that was definitely happening no matter what – get it all out! This was less of an “option” and more of a “we will be doing this”
- presacral neurectomy – this means the sensory pathways from my uterus through my spine up to my brain would be severed, obstructing the ability for my uterus to send pain signals (very medical, I know) and I would retain my organs
- Supracervical hysterectomy – removal of ONLY the uterus
- Total hysterectomy – removal of the uterus, cervix, and Fallopian tubes
I didn’t need to make a decision between the neurectomy and hysterectomy types right then, and was told a decision could be made at my pre-surgery appointment. He was also insistent I come off Lupron immediately (hallelujah!!!), and asked me to also get a bone scan as soon as possible, since Lupron causes osteoporosis and bone loss.
I agreed to come to Atlanta, and a surgery date of October 8, 2019 was set, the day after my 33rd birthday, and twenty years after my pain began.
The estimates began to come in – and let me tell you, as a Canadian who does not pay for medical services like doctor visits, hospitals, or surgeries, I had a REALLY hard time wrapping my head around spending this kind of money. Was it really worth this level of debt? How on earth was I going to even be able to come up with the funds to pay this? As noted in my prior posts, receiving care was no longer an option. I could stay on Lupron, and that was my only option until I was older and at a menopausal age to receive further care. These weren’t options, these were a death sentence.
The one perk of being a self-pay (aka no insurance) patient is that the hospital offers a hefty discount on services…if you pay the whole bill within 30 days (insert more panic, how do I come up with this money because I’m sure not leaving this balance on my credit card). How I did it? A line of credit with my bank plus a loan from my mom, plus a kick in the butt from my (now) husband who reminded me that there was absolutely no way that I could continue my life in this kind of pain. I’m not going to list the actual amount I ended up paying, because every person’s surgery is different and the costs vary on a case by case basis, but it was in the tens of thousands of dollars.
For my Canadian readers, our insurance did not cover this surgery because it was “elective” as I “could” have done it in Calgary/Canada (I couldn’t, nobody would treat me anymore) and it wasn’t an emergency (as in I wasn’t hit by a car while in the US and needed immediate care). Medical charges in the states is also broken out – I had a bill for Dr. Sinervo, the hospital, pathology, anesthesiology, radiation (my bone scan because Canada will NOT scan you if you aren’t over 50 even if a drug you were on could destroy your bones, nbd Canada don’t worry about it) and of course full price prescriptions.
We flew down on the Sunday, as my appointment with Dr. Sinervo was the Monday morning. I instantly felt more at ease walking into the Center – everyone actually UNDERSTOOD what endometriosis is and how painful and miserable it is. Every staff member was kind, caring, and answered any concerns. Dr. Sinervo is one of the kindest people I have ever met – he walked both N and I through the possible procedures, explained what each procedure meant, and just showed a level of compassion I’ve never received before.
During my pelvic exam and ultrasound (he did it himself in the center, no trekking to a lab for any of this and frankly it blew my mind) he told me something wasn’t right with my uterus, it had “devil horns” and was extremely pissed off as he could barely get near it without me yelping. In that moment, he told me it would be wise to choose the hysterectomy, because severing nerves only lasts so long and it was clear my uterus was a driving factor. He also saw my scar from my 2010 appendectomy (which was such a botched surgery don’t even get me started) and told me he could fix it if I wanted. That was a quick yes, please.
I left his office with a time to be at the hospital, had blood work done, and my bone scan – the results came back normal for that thank goodness, others aren’t so lucky if they’ve had to take Lupron.
In order to prep for surgery, bowel prep began that afternoon. If you have never had to do bowel prep, you’re lucky. It was a horrible experience and I was trapped in the hotel room for the rest of the day and night (happy birthday to me).
I went to bed that night anxious, nervous, scared, and unsure. Realizing your ability to have children is about to be taken away, even though you knew the likelihood was already extremely low, is a very difficult thing to process and go through. However, that topic alone is enough for an entire blog on its own, so stay tuned.