We are halfway through Endometriosis Awareness Month and this week we had the absolutely pleasure of sitting down with the hilarious and powerful Juiianna.
Julianna let’s start off with a quick introduction.
Hello! I’m Julianna and I’m a high school teacher in Toronto, Ontario. I’m unhealthily obsessed with Musical Theatre, the Green Bay Packers, sharks, and live tweeting “The Bachelor” because I’m nothing if not well-rounded.
“The surgery provided temporary relief but, again, the endo came roaring back. This time, it decided to take my bowels hostage which resulted in many partial blockages and generally feeling like barbed wire was snaking through my insides every time I digested food. ”
OK let’s get right into it. Tell us about your journey.
My journey with chronic pain started the day I got my period. It was some day in August when I was 13. (The details are fuzzy because my mother called all of Italy to let them know I was a woman so I blocked out a lot of that for survival purposes). From the very first day of my very first period it was excruciating. My adolescence consisted of me being on the floor of my classrooms in the fetal position in agony. I was met with constant criticism and repeatedly told that blinding pain was “normal” and to deal with it and move on.
This insanity continued into my 20s with some extra side dishes like anxiety and depression added to the buffet of health issues. Things were getting worse despite my making major changes like increased exercise and dietary shifts. I got a new family doctor when I was 28 because I thought a younger doctor might be more “with it” in terms of endometriosis care, but I quickly learned that medical school hasn’t changed in eons because this doctor was no different than the litany of misinformed practitioners left in my wake before this one. I had done my own research (like so many of have to do) and I said I was the textbook definition of endo and I wanted a referral to a gynecologist. He refused. Up until this point in my life I would definitely have defined myself as a doormat pushover. However, that day, my spine grew three sizes a la “The Grinch” and I told him I wasn’t leaving until he gave me that referral. He reluctantly did and that referral led to my first surgery. It was exploratory to diagnose endometriosis, however I wasn’t informed enough to tell them not to proceed if they found any, so that surgery ended up being an ablation, which is not helpful and actually made things much worse for me. But it did result in a diagnosis of Stage IV endometriosis which is what I needed to move forward.
After that initial surgery and diagnosis I was put on good ‘ole birth control (it’s AMAZING how much doctors are still in love with that tiny pill) to try and manage my symptoms. It controlled my periods and calmed the bleeding a little bit, but pretty soon into the treatment everything started going downhill again. The pain was back with a bloody (literally) vengeance and I had to seek out a new gynecologist to help me out. I ended up in the office of a specialist who knew about endo but worked out of a fertility clinic. Fertility is not my priority and once that was made known, I fell to the bottom of the priority list in a hurry. This gyno put me on Visanne which puts your body into a chemical state of pregnancy in order to hit “pause” on your ovaries and their hormone factories. This worked in that it stopped my periods but it also resulted in me gaining 70 lbs over two years which then resulted in further complications (I was teetering on the edge of diabetes) and no relief from the pain. When it became excruciating just to have a full bladder, he decided another surgery was needed. Thus began my odyssey to find another surgeon. I was turned down by FIVE surgeons over the next 10 months because my case was “too complicated” and they were “not qualified”. I finally ended up in the care of my current surgeon who knows endo inside out and is an expert in Minimally Invasive Gynecological Surgery (MIGS). He eventually performed an expert excision surgery and removed endo from my bladder, bowels, both ovaries, uterus, ureters and uterosacral ligaments. It was having a REAL rager in there. I also happened to have a partial thyroidectomy that year to remove papillary thyroid cancer so between the two surgeries, my body was over everything. The surgery provided temporary relief but, again, the endo came roaring back. This time, it decided to take my bowels hostage which resulted in many partial blockages and generally feeling like barbed wire was snaking through my insides every time I digested food. We booked another surgery last January 2020, but it was cancelled multiple times on account of the apocalypse. I FINALLY had it this past February 24, 2021 and am currently dealing with the post-op pain, which has been plentiful. Hopefully this surgery will allow me to have a little more time pain free, but we won’t really know until I’m healed. However “healed” my pelvis can be after being carved up multiple times. Endo is just a PEACH!
I was so excited to see your Insta story about FINALLY getting a surgery date. I know you’re still in the thick of it but can you describe what your pain feels like? If possible, can you tie the pain to the disease.
I have different “flavours” of pain, as I call it. I often experience very sharp pain emanating from my left ovary (the left is always the worst side) where it feels like my ovary has been armed with an ice pick and is trying to stab its way out of me. I also have the classic “cramps” where my uterus makes it known how displeased it is with the adenomyosis I also have (endo in the muscles of the uterus) and stages its own protest. I have to respect that kind of hustle. When my bowels join the party I get the aforementioned “barbed wire snaking through my insides” pain, and when I have a full bladder and whilst I’m emptying my bladder I get a very sharp throbbing pain. So, I never really know what kind of pain I will be graced with throughout any given day, but I DO know that I will never have NONE, which is super fun.
Since you do have a few different illnesses that you are working with, how did the progression of diagnosis go for all of these?
When I initially sought help for my issues in my late 20s I was sent to a gastroenterologist who performed a colonoscopy. Because it came back normal (because they were looking up the wrong hole) I received the EVER so infuriating diagnosis of IBS (which I have renamed “Illegitimate Bull Shit”). I had to fight that for years because too many doctors were willing to accept that “diagnosis” as the answer to everything, despite the fact that the vast majority of my symptoms had nothing to do with my bowels. It took me a grand total of 15 years to get a diagnosis of endometriosis and adenomyosis because of a general willful ignorance of doctors.
Did any of your doctors tell you that you have X because it’s more prevalent in women with Y? Just wondering if there is a clinical link between anything you’re battling.
I am absolutely convinced that there is a link between my thyroid cancer and my endo, however neither of my specialists seem to think so because all specialists think the part of the body they specialize in is THEE only part that exists. I was told by many doctors that excruciating pain during menstruation is normal though, which brings on a fresh new wave of homicidal rage every time I hear it.
What are some of the more modern medicine techniques that have worked for you?
The only thing that has proven to be effective for me is excision surgery. It is the only treatment to restore any quality of life for me, and how I have been able to put together a full picture of the war zone that is my pelvis. I can most definitely share what DID NOT work and that is hormone therapy. I was put on birth control, Visanne and Lupron and NONE of that garbage helped and only made my life harder and put further strain on my body.
Have you ever reached a point where you had to think outside the modern medicine box? If so, what did you do that helped with the pain?
Absolutely. I started using CBD oil to manage the pain and I started going to acupuncture regularly and that has made a HUGE difference in terms of pain management. My acupuncturist specializes in reproductive health and is constantly educating and re-educating herself on endo and her treatments have most definitely helped with pain management.
Generally speaking, are you open to alternative therapies such as osteopathic, pelvic floor, myofascial massage, acupuncture?
I absolutely am! I recently started seeing an osteopath and she has recommended pelvic floor therapy which I am very open to, just haven’t started on account of the apocalypse and everything closing every 10-15 minutes. I have definitely enjoyed the osteo sessions, but that could be because I’m so starved for human touch. Ha!
What would you tell our readers in order to help them consider alternative therapies?
Any time you are seeking out new treatment from anyone (doctor, specialist, practitioner, etc) do you research! Not everyone has the same training and not everyone takes the initiative to learn about advancements in treatment or diseases. Having said that, SO many of the practices (like acupuncture) have been around for centuries longer than our version of medicine and have proven effective for that long. I’m a firm believer in balance. Would I turn down surgery in favour of acupuncture? Absolutely not. But has acupuncture helped me in conjunction with the treatment of modern medicine? HELLZ YES. It is your body and you and ONLY you know what helps and what hinders. If you find something that helps, go with it.
And lastly, what would you tell your younger self about pain management?
“Julianna, Advil are NOT Peanut M&M’s. Stop eating them like they are”
OH and also:
“SEARING, UNBEARABLE PAIN TO THE POINT OF FAINTING AND BARFING IT NOT NORMAL AND DO NOT LET ANYONE TELL YOU IT IS!!!!!!!!!!!!”
Anything else you want to tell our readers?
Too many of us have been programmed to believe that seeking help for pain is “weakness” or just “complaining”. It is not. Taking time to get your health under control is not weakness, it actually takes an incredible amount of strength to prioritize your well-being. Pain is your body’s way of telling you something is NOT right. If you ignore it, it will find a way to get the message through and at that point you won’t have control over the circumstances. Listen the first time that little voice tells you something’s up, because it will save you a lot of time and pain in the future.
Thank you so much Julianna!