Blind Obedience

Following my outpatient "Party in the OR," I gave no more thought to the disease called endometriosis. I didn't even bother to look it up after my initial diagnosis. It had been removed and, as far as I was concerned, it was a non-issue.

Around the 6 month mark post-op, pain began cropping up again, at first only occasionally, but by 9 months post-operatively, I was experiencing life disrupting pain on a daily basis. Dr. McLelland, the OB-GYN who had done my laparoscopy, prescribed narcotic pain medication which sometimes helped, but most often, did not. As a busy, working mother of two, I had little time to be knocked out by narcotics, so I tried not to take them unless I absolutely had to. I was laid up...a lot. It began to effect my job. I did my best to keep up with everything and just push through even when I was dying inside with pain. Even though my full-time position as Resident Manager of a duplex community only required me to commute to an office downstairs in my own home, the role also required that I take potential residents out and give them tours of apartments on the property we managed (105 units total) that were vacant. It was exhausting and I was in pain...all day, every day.

I met with my doctor again in late August of 2007 and she recommended a medication called Lupron. I had no idea what it was, but if it meant that I would no longer have pain, I was game for anything. She explained that this 3-month injection would put me into a medicinally-induced form of menopause, stop the production of estrogen which feeds the endometriosis and end the disease. She suggested that we inject the first dose into a "blank canvas" by conducting a second laparoscopy to, once again, clear out any new endometriosis growths and then, prevent it from growing back with menopause. To me, a person who had not even done one Google search for the word endometriosis, this sounded reasonable and I signed up for a second "party in the OR" with the naivete of blind obedience to conventional medicine. I didn't consider any other option. I didn't question that not even one whole year had passed since my original laparoscopy on October 30, 2006. I didn't ask why this was happening again so soon. I simply got the necessary paperwork together and was scheduled for surgery on October 1, 2007.  This one would go just like the first, but would end with a giant syringe of medication priced at $1875 per injection being shot into my posterior. 

Anesthesia for the Unhappy Drunk

Awaking after surgery has always been a struggle for me.  I am what some doctors refer to as an "unhappy drunk." What this means, in addition to the fact that I have been known to end up in tears when I drink too much (just ask my husband or any sister of Chi Alpha Zeta sorority at Plymouth State College), is that I wake up from anesthesia sobbing and asking for someone from my immediate family. The first time it happened was when I had my wisdom teeth removed during my college years. I awoke in a completely different room in the dentist's office from where I was anesthetized and because I had a mouthful of cotton, my sobbing sounded something like, "I wha ma da." (I want my Dad.) When the dental assistant couldn't figure out what I was saying, I began gesturing a steering wheel - still sobbing - indicating that I wanted my driver. She thought I wanted to drive and laid me back down where I continued to sob. My dad loaded me up in the car - still sobbing - drove us 20 minutes home - still sobbing - and got me set up on the couch - still sobbing. Now I was saying things like, "I do no wha I cwyin, it no hur! I ju ca sta cwyin!" (I don't know why I'm crying, it doesn't even hurt! I just cant stop crying!) I asked an anesthesiologist once why this happens and he said that anesthesia is a lot like getting really rip roaring drunk and losing all inhibition, so whatever emotion is truly in you comes out. He looked me dead in the eye and said, "You, my dear, are an unhappy drunk." When I started to look back, I realized he was right!

Waking up in the recovery room at Erlanger Women's East after my party in the OR, was no exception. I was sobbing and asking for my sister - who lived 8 states away. She also was not the person waiting to take me home. That was my husband, Jim.  While I was still coming down from my unhappy drunken stupor, Dr. McLelland informed Jim that she had found and removed a lot of something called endometriosis, a disease that neither of us had ever heard of before. I was told to rest and be "a slug on the couch" for the next several days and follow back up with her in the office a week later. We were sent home before 2pm.

Of course, when I got home, I had a 3 year old and a 10 year old there waiting for me and I was feeling good from the pain medication. I found myself sitting on the floor pulling out toy playsets and setting up worlds of Winnie the Pooh with my girls by dinner time. I was the exact opposite of "a slug on the couch" until I awoke the next day to pain that felt like I had been hit by a Mack truck. No one had warned me about the "gas effect." For abdominal laparoscopy, they create three or four small incisions and then inflate your abdominal cavity with air. When they close the incisions, the air remains trapped and it gets displaced and re-absorbed into the body. Because the gas rises, the pain associated with that process usually happens in the shoulders and arms.  Additionally, because I had been rolling around on the floor laughing with my girls the afternoon prior, the pain hit me like a ton of bricks!

When I followed up with Dr. McLelland a week later, she assured me that the surgery had been a success and that the endometriosis had all been removed. I was still a little sore from being the worst patient EVER and not following the one rule - "slug on the couch" - but overall, I didn't concern myself with the word endometriosis. Whatever it is/was, it was gone now and in my "unhappy drunk" mind, life was about to go on...

Party in the OR

So, back to my endo story... I last left off with my first endo/PCOS (polycystic ovarian syndrome) related visit to the emergency room in September of 2006.  I was sent home with Percocet and told to follow up with my OB/GYN. The following week, I did. During that visit she conducted another ultrasound which confirmed that "too many cysts to count" were still present on my left ovary and I was OFFICIALLY diagnosed with PCOS. From this point on, my abdominal pain remained fairly consistent and I "opted" - I love how that makes it sound like there was some kind of choice involved - to have a diagnostic laparoscopy to determine what else, if anything, was happening inside of me. I had the surgery on October 30, 2006 at the same gorgeous hospital - designed especially for women - where I had, three years prior almost to the exact day (November 3, 2003), delivered my first miracle baby, Elizabeth. Thankfully, there was a different entrance for surgical procedures and labor/delivery so I wasn't bombarded with people coming and going in various states of pregnancy, labor OR delivery.

Not only was this my very first endometriosis surgery, this was also my very first surgery in a hospital - EVER! I had my wisdom teeth removed while I was in college, but I never count that because it happened in the dentist's office. Maybe I should say this was the very first surgery that required me to put on special gear and have a living will in place or the first one that took place in an official operating room!  I just remember not being nervous. I was excited that I would have some answers by the end of the day. I didn't once consider that this procedure was just the very beginning of what was to be a life of chronic medical consultations, procedures, treatments, therapies...oh, sorry...I'm getting ahead of myself. Where was I? Oh yeah, in the waiting room with my husband.

We were called back to pre-op where I was welcomed by a lovely nurse with gorgeous red, curly hair. I remember this very clearly because as a redhead myself, I always wanted the kind of curls that this woman had. She presented me with my "party clothes" - her words, not mine. The party ensemble featured a johnny - not a cheesy paper one like in the office or the ER, but one that actually wrapped all the way around me without ripping AND a matching johnny "robe" that went on normally to cover the back so my rear end wasn't hanging out for the world to see as I later walked myself down the hall to the OR. I was also given socks with grips on the bottom so I wouldn't slip when walking around the linoleum floors. The icing on the "party clothes" cake was my "party hat" - a surgical cap to contain my head of wild red hair. If this had been the time of camera phones or selfies, I would surely have documented my pre-op look for all posterity, but alas... it was 2006.

The placing of my IV went off without a hitch and before they gave me a little bit of pre-op medicine to ease my (now present) nervousness, the doctor came in to talk with me about what would be happening after I was sedated. I was very thankful for my OB/GYN at the time. As a Christian, she prayed with me before she left the room and this put both my husband and I at ease. I also knew that my husband would be praying for me in the waiting room throughout my procedure.

It was just about time to head back to the OR, so the nurse came to deliver my pre-operative calming cocktail via IV. I left my glasses with my husband and followed her blindly through sterile hallways and double doors to the OR. There, in a the glaringly white room, I was asked to get up onto the operating table and the last thing I remember was someone saying..."There she goes..." I fell asleep thinking about raindrops on roses and whiskers on kittens.  All of my favorite things... Completely unaware of what awaited me on the other side.

Socialized Medicine

I just had to take a break from telling my Endo story to address an issue that has become of great concern to me... socialized medicine and it's impact on my international Endo sisters (fellow women suffering at the hands of endometriosis). As a health and wellness professional and a vocal advocate for cancer patients in the United States, I find myself on Capitol Hill a few times a year fighting for better health care and insurance coverage for our most vulnerable populations, specifically people with pre-existing conditions like cancer. I have always been all about everyone having access to affordable health care. I believe that there are basic minimum coverage requirements that must be provided. I have also been very disappointed in the lack of "affordability" in the Affordable Care Act. All this being said, I have recently connected with Endo sisters from around the world through social media and the stories being shared about their experiences with socialized medicine are truly horrific!

In countries where health care is provided by the government, endometriosis patients are continuously pushed down the priority list, made to wait YEARS for diagnostic surgery, forced to accept sub-par treatments while they wait and hitting rock bottom - losing jobs, relationships, financial security and independence while they wait in painful silence! Many of these countries are creating opioid epidemics of their own by throwing medicinal band-aids at Endo sufferers in the form of codeine, morphine and the like... or not providing them and leaving my Endo sisters to live in ridiculously intolerable pain while they wait what feels like a lifetime for their turn to get superficial, ineffective treatment - only to be put back at the bottom of the waiting list when told they need more surgery.

Recent stories that have come across my Endo news feed from countries with socialized medicine are simply tragic. Take the Endo sister in New Zealand who suffered 7 years before getting her first diagnostic laparoscopy - the starting point for endometriosis diagnosis. They didn't remove the Endo then. Instead, they stitched her back up and put her back on the list for a second surgery. Pushed back months, she went for her second surgery - cancelled trips, declined wedding invitations, took time off school - waited IN THE HOSPITAL all day expecting to have the surgery to finally remove her Endo, only to be told later in the day that they had run out of time for surgery and she is now back on the waiting list. I had no idea that things like this could even happen!!!!

After 10 years of battling, another Endo sister in the UK FINALLY got a date for the hysterectomy she has been begging for to hopefully get some relief from her endometriosis... unfortunately, it's still another year away.

I've actually toyed with the idea of going to Canada for better healthcare since I live only 15 minutes from the Canadian border, but even our friendly neighbors to the north experience excessive wait times. Many Canadian Endo sisters have shared that they've undergone multiple unsuccessful surgeries in the hopes that "this one will work." Desperate, but with no other options, they succumb to surgery after surgery with inexperienced doctors who are unfamiliar with the complexity of this disease.

#CanadaWaits

The average American woman suffers nearly 5 years before finally going to the doctor for endometriosis related symptoms. Then, an additional 5 years being tossed around in the health care system - often misdiagnosed and misunderstood - is the average time it takes for that woman to be properly diagnosed according to a study by the North American Endometriosis Society. For Endo sisters in countries with single payer healthcare, you can tack on additional years of just waiting to be seen or for diagnostic surgery.  Unfortunately, in many of these countries, doctors skilled in treating endometriosis have exceptionally long wait lists for care. In the meantime, Endo sisters, desperate for relief, accept sub-par treatments that are likely doing more harm than good. Those who are able sometimes opt to travel to other countries to receive proper care in a more timely manner out of desperation....at their own expense.

All of this has made me think long and hard about how I view the grass on the other side. It isn't always greener. Is healthcare overpriced here in the United States? ABSOLUTELY! Is health insurance overpriced here in the United States? ABSOLUTELY! However, if I wanted to, I could go get my diagnostic laparoscopy done within the next 30 days. In less time than that, I have had CT scans, surgical consults, a consult with an endo specialist, a colonoscopy appointment and an appointment with a urologist.

Socialized healthcare may be "free," but it still comes with a cost. For many of my international Endo sisters, the cost is their employment, their independence, their relationships, their finances, their quality of life... They watch it all just go down the drain as they wait and wait and wait.

To be fair, many American Endo sisters also lose a lot...I, myself, lost many years of my life bed-ridden from this disease and spent money that I didn't have on medical care looking for a diagnosis which I will continue to share about on this blog. However, when you have no alternative options because of socialized medicine, it can quickly bring you to a very hopeless place which is what I am seeing a lot of from my international Endo sisters.

Considering that endometriosis affects 1 in 10 women ages 15 to 49, Endo sufferers world-wide are in a very precarious place  They still have the majority of their lives in front of them, but when they have no idea how long it will even take for them to be seen, many don't recover from the depression that living with chronic endo-induced pain creates. Suicide rates among endometriosis sufferers continue to rise. It is abysmal and unnecessary.

There needs to be MORE research, more education and training for doctors GLOBALLY and most definitely, better access to care. PERIOD.

My First Trip to the ER

In 2005, I became the Resident Manager of a 105 unit duplex community in Hixson, Tennessee called Towne Hills Residences. It was a live-in position which meant that I was basically on call 24/7 and the office was in my home - literally down 8 steps - which made it that much more convenient when I was having a lot of pain during my cycles.  Elizabeth was now 2 years old, we had just gotten custody of Christina, and Jim was also home full-time and working with me as the Leasing Agent/Assistant Resident Manager for the community. Things were good, but each month my pain got worse and worse. 

At the end of September of 2005, my parents visited. While they were visiting, I had a day of EXCRUCIATING pain - unlike any other that I had experienced to date. I honestly couldn't tell exactly what it was. Was it an upset stomach? Gastro-intestinal distress? Menstrual issues? I was about a week or two out from my last period, so that couldn't be it. I writhed in pain just praying for it to end. I couldn't tell if I had to throw up or poop! I just wanted it out of me, whatever it was that was causing this. I took matters into my own hands and pounded cups of laxative tea that I had laying around from detoxes past. If it was gastro-intestinal, I was determined to blast the nastiness out of me!  Two hours later, still desperate for relief, I found myself, for the very first time in my life, hovered over the toilet bowl using my finger to try to make myself throw up whatever it was in there that was making me feel this way! As food and beverage hadn't been high on my priority list while writhing in pain, it of course led to nothing more than dry heaves and disappointment. I was a hot mess and could do nothing more than cry and pray for whatever it was to stop. Tylenol, Ibuprofen, Aleve, Motrin...nothing helped.

Erlanger Emergency Room

After almost 12 hours of tears and agony, Jim looked at me and said, "That's it...we are going to the hospital." It was a little after 8pm. The girls were in bed and thankfully, my parents were there to watch them while Jim took me to Erlanger in downtown Chattanooga, about a 15 minute drive from our home. We had been to the children's hospital's ER with Elizabeth a few times since she was born and TC Thompson Children's Hospital in Chattanooga had super fast service. We were often in and out in a few hours. Erlanger , however, was a different story. This was the night that we learned that if you went to Erlanger you needed to pack an overnight bag, blanket and pillow because you were going to be there for a while. The waiting room was packed when we got there. People were throwing up in little blue vomit bags from dispensers in the waiting area.

There was one lady in a wheelchair SCREAMING in pain...for HOURS. I was lying down with my head on Jim's lap crying softly to myself and praying that when the next name was called, it would be mine. At about hour two, the screaming wheelchair lady sort of passed out and fell out of her wheelchair. This got her rolled out back immediately. We waited in the waiting room at Erlanger for almost three hours just to be triaged as more and more people rolled in. Finally, just before midnight I was triaged and brought back to the inner sanctum.

They hooked me up to an IV pretty quickly and relieved my pain with something miraculous called Dilaudid. Then, they rolled me out back to radiology for an ultrasound. After another 2-3 hour wait, the doctor came back in to let me know that the ultrasound had detected a quarter sized cyst on my right ovary that was in the process of rupturing and "more cysts than they could count" on my left ovary. He suggested that I follow up with my OB/GYN to discuss management options for Polycystic Ovarian Syndrome (PCOS) and sent me home with a prescription for Percocet.  Thankfully, I had gotten some Dilaudid-induced sleep, but poor Jim had basically been stuck in a plastic chair the entire night. We left the hospital bleary-eyed around 10am the next day. On the way home, I called to set up an appointment with my OB/GYN. Thanks to my parents being there for the girls, Jim and I were both able to crash when we got back to the house. With the luxury of working in my home, I was able to rest quite a bit until my appointment with my OB/GYN appointment that was scheduled for the following week.