I don’t know when or how I first developed endometriosis. No one really knows, as most women fight through years of misdiagnosis after misdiagnosis before finally, after ten years or so, landing on the correct diagnosis. Theories abound regarding how this disease arises, from an outdated theory by a guy named Sampson to more recent and scientifically based theories involving stem cells and other genetic factors. For a complete, authoritative review on endometriosis, I have found this article from the Center for Endometriosis Care to be most excellent.
As far as my story goes, I will share as much as possible to give you a complete understanding of what this disease is and the tremendous effect it can have on the lives of women. I will talk about uncomfortable things, like sex and lady parts, so get the giggles out now. It may takes several posts, but if you stick with me I think you will be a a smarter person for it. 😉 Are you comfortable? Me too, my pain meds just kicked in. 😳
As for me, my journey with endometriosis, known as endo among those affected and those who treat it, began on April 18, 2014. I woke up that day with intense right-sided abdominal pain. I remember it felt like my right ovary was being stomped on and I was being punched in the belly button from the inside out. The pain took my breath away, but I went to work anyway. I miraculously made it through 6 hours of my shift in the pharmacy before my coworkers sent me home since I was pretty useless due to the pain. Once I got home, my husband David and I realized that I had every symptom of appendicitis except fever and vomiting. Both being hospital pharmacists, we’ve seen our fair share of perforated appendices and didn’t want me to wind up in that boat, so back to the hospital we went, this time to the emergency room.
A myriad of tests were performed: the usual physical exam (*poke* “Does this hurt?”), a pelvic exam (“We’ll use the pediatric speculum on you since you’ve never had a baby”), and one of those wonderful ultrasounds (“It’ll be cold and wet”) where they stick a probe up your hoo-ha (aren’t those fun, ladies?) Morphine was given (thank God!) Finally, about 4 hours after we had arrived in the ED, I was diagnosed with a tubo-ovarian abscess (TOA) because the (sleep-deprived) radiologist saw an elongated structure in my right Fallopian tube. I was admitted for IV antibiotics with a low threshold to be taken to the OR if I spiked a fever. Thankfully, I didn’t, and since I felt a great deal better after only 36 hours of antibiotics, the doctors let me go home on oral antibiotics instead of keeping me a full 48 hours.
Within a few more days on antibiotics, I became convinced that the infection was a misdiagnosis. Although I was certainly feeling better than I had been when I was admitted, my pain wasn’t diminishing to anything less than a 3/10. So I started scouring the Internet for what could cause a blocked Fallopian tube because I was convinced that a TOA was a misdiagnosis. While searching, I came across a list of a few things, and one of those things was a word I had researched before, but had long since forgotten about: endometriosis.
Rewind to 2006. Following a bout with a really mean ovarian cyst in 2005, I started seeing an OB/GYN who put me on birth control to prevent more cysts from forming. After I stopped the birth control because I couldn’t tolerate it, I remember looking up symptoms of pelvic pain because I had been having very painful periods for several years prior to this. I asked her about endometriosis, but she said that because I wasn’t sexually active, we didn’t know if sex was painful, so I didn’t have enough symptoms to be diagnosed. (Newsflash: That’s complete BS.) So I let it drop.
Fast forward to May 2014. The more I read about endometriosis, the more convinced I became that this is what I had. My symptoms included:
- Painfuls periods (previously sometimes so debilitating I would miss class in college)
- Occasionally very heavy periods
- Lower back pain prior to and during menses
- Painful sex (which is a sad thing when you’re in your first few years of your marriage)
- Painful bowel movements
At my first visit with my new OB/GYN (who had overseen my care while I was in the hospital), I boldly announced that I thought I had endometriosis. To his tremendous credit, he agreed with me and actually admitted that he had thought the TOA was a misdiagnosis the whole time, but it had to be ruled out. He recommended proceeding with a diagnostic and possibly therapeutic laparoscopy if he found any endo tissue.
The big day was June 2, 2014 (see picture above). I was nervous, as the only previous surgery I’d had was a short 45 minute repair of the cartilage in my left knee. Unfortunately, I had every right to be nervous. Due to having a less than stellar anesthesiologist on my case, my next conscious thought after being sedated on the operating table was waking up in the PACU in the most pain I’d ever experienced in my entire life. I was screaming. I was shaking. And when you’ve just had abdominal surgery, the last thing you need to be doing is tensing up and shaking. There were about 4 or 5 people around my bed trying to calm me down, wrapping me up in warm blankets like a mummy so only my face was visible and pushing so much pain medication I fell asleep for 2 more hours. Upon waking, I was as nauseous as an astronaut in training on the Vomit Comet. Unfortunately none of the nausea meds worked and they wouldn’t give me any oral pain meds until my nausea was under control. So I was discharged nauseous with uncontrolled pain. Stellar.
On the way home, as I tried not to puke all over the dashboard, David explained to me what they’d found. I was diagnosed with stage II endometriosis, which had been taken care of with ablation (which I later learned is not proper treatment for the disease. More on that to come). He also said my surgery had been 2 hours long because they’d had to bring in a general surgeon to remove my appendix which was inflamed and firmly wedged inbetween my right ovary and Fallopian tube. So that TOA? Confirmed to be a huge misdiagnosis, since the “TOA” was actually my appendix. Very enlarged and covered in endometriosis, as we later found out when the pathology came back. I also had endometriosis on my left ureterosacral ligament and the right cul-de-sac (the anatomical space in the body between the vagina and rectum).
In the ensuing weeks, as the surgical experience from hell fell further and further behind me (complicated by a Group-B strep UTI thanks to the Foley catheter, hmmph), I began to have an inkling that something was still wrong. I was still having fairly significant pain at the time of my follow up appointments with both my general surgeon and OB/GYN. My OB/GYN explained that I could have “microscopic disease” that now was active. He recommended a trial of a Lupron, a drug used to “treat” endo that, being a pharmacist and knowing its vicious side effect profile, I refused. My only other option, he said, was to take pain meds until I got pregnant, at which point I might feel better for 9 months and then who knows what would happen after? Ok then.
Back to Square One
I left his office feeling defeated. I figured I would just let the disease run its course and see what would happen. Well, two weeks later, I had a flare that left me clutching my heating pad for dear life, begging for something to help the pain that not even Percocet was touching. It was a sad and rude awakening to me that something was still wrong and this was to be my life from now on. Who else could help me?
Within a few weeks of continuous pain, I was reduced to a zombie with a non-existent quality of life. I was completely bedridden when I wasn’t at work. I would shower twice a day to try to lessen the pain. And the “take pain meds until you get pregnant” approach was no longer an option; the one time my husband and I tried to be intimate was just as painful as it had ever been. As I lay in our bed in tears, I thought the chance of ever having a child was now gone from me. How was I supposed to conceive a child if I couldn’t even tolerate the act itself?
But a chance encounter on a Facebook support group would soon lead me down the path that would be the turning point in my battle with endometriosis. Continue reading my story in Know Your Enemy.