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.

Doubling Our Family

With the exception of a move from New Jersey to Tennessee in my first trimester and assuming the role of houseparents to 8 girls ages 6 to 16 in a Christian group home called Bethel Bible Village, my pregnancy was fairly uneventful. The 6 year old in our cottage was a little African-American girl named Christina Graham. About a month after we started at Bethel, Christina went back home to live with her mom. We stayed in touch because I had really connected with her when we traveled to Tennessee to interview for the position. In late October 2003, it became clear that Christina's mom was not taking care of Christina. Almost simultaneously, our miracle baby, Elizabeth, was born on November 3, 2003. She was perfect in every way and had a head full of red hair just like me. About a week after my delivery, Christina returned to Bethel Bible Village because the risk of her being put into state's custody was very high due to her mom's risky lifestyle and negligence. As Elizabeth grew, we continued to connect with Christina on a deeper level. Each month, if the girls in the cottage had a viable home option off campus, they went there for the weekend. Christina did not, so on "weekends off," Christina stayed in the cottage with our little family. These weekends afforded us the luxury of connecting with her on a whole different level without 7 other girls vying for our attention. We were able to do more intimate family-type activities and she stayed with us on major holidays as well. Within a few years, Christina came onto the state's radar as a child being "abandoned by neglect" since her mother was not doing much to restore custody. In order to prevent the state of Tennessee from taking her into their custody, her mom granted temporary custody to Bethel Bible Village. In the spring of 2005, Jim and I decided to leave our position at Bethel and focus on our little family. We were in the process of completing foster parent training so that we could get custody of Christina. That fall, Christina's mom signed her over to our custody and we took her with us out of Bethel Bible Village, which had been her home off and on since 2001. This eventually led to Christina's adoption in July of 2007. We went from being able to have no babies to doubling our family in a matter of 5 years.

Elizabeth's Birth Day - November 3, 2003

Christina's Adoption Day - July 16, 2007

As busy as we were at this point in our lives, the pregnancy and subsequent breastfeeding had knocked back my abdominal pain substantially.  With the exception of severe menstrual cycles, I didn't have too many days of being bed-ridden with pain. That all began to change in 2005...about 2 years after Elizabeth was born.

The Dream

After Jim and I became Christians, we were still living together before marriage...a little situation that did not go unnoticed by our newly converted, Christian, Bible-study friends. On my way home from work one day, it hit me over the head like a ton of bricks. When I got home, I let myself into the apartment we shared and proceeded to move all of my stuff into the spare bedroom.  It made no sense for me to move out.  We were getting married in less than a year and anywhere I would move to would require me to sign a year's lease.

In preparation for our wedding, we completed a premarital Bible study where the topic of children once again came up (FINALLY) and in a seeming bout of amnesia about the fact that my OB/GYN had told me children were pretty much unlikely, we decided we would use the Natural Family Planning Method when we got married and resumed those kinds of relations...as if we had any real control over our ability to procreate. For those who are unfamiliar with this method, it entails charting the woman's basal body temperature and cervical mucous to be able to pinpoint ovulation. If you want babies, you have sex when the ovulation is happening and if you don't want babies, you don't. As a hyper-organized newlywed, charting all of this made me happy and crazy all at the same time. I had to use a mercury thermometer (which took FOREVER - literally five minutes in my closed mouth in my groggy just awoken state - thus, the crazy) to take my temperature every morning before getting out of bed and then, I recorded it on a chart (colors, dots and lines = HAPPY). It did not go unnoticed by me that a couple days before my temperature went up signaling ovulation, my abdomen started hurting.  This was, perhaps, the most in tune with my monthly cycle that I had EVER BEEN IN MY LIFE and I was now realizing that I was pretty much experiencing pain from the time I ovulated until my period ended about 14 days later. GOOD TIMES... We tracked for several months, but with my pain being cyclical, I knew that there wasn't much need. I knew EXACTLY when I was ovulating and because of the pain that I was in the majority of the month, there wasn't much action happening, if you know what I mean. So, we stopped tracking...probably right before the holidays in 2002.

Well, at the end of my last post, I shared that we had been eager as new Christians to find a place we could serve and that eagerness led us to a little ministry in Hixson, Tennessee called Bethel Bible Village. We had been married for less than a year when we traveled down in February of 2003 to check it out, meet the staff and see if this was where the Lord was leading us. We were considering a houseparent position to children displaced from their homes for a variety of reasons. During the week we were there visiting, we had dinner at the cottage we were being interviewed and screened for and there, we met a little African-American girl named Christina Graham. She was 6 years old and the very first words she ever said to me were, "Are you going to be my new mommy?" We sat and did puzzles together on the living room floor as 7 other girls, ages 12 and over, who also resided in that cottage came back and forth around us. The house was hustling and bustling, but the connection between Christina and I made the rest of the world melt away and I floated back to the guest room where we were staying thinking about that adorable little girl.

Later in the week, we had dessert at a staffer's house where we talked about houseparenting...what it was really like. "I'm not going to lie," she shared, "It can be extremely challenging...especially during THAT time of the month!" When we got back to our guest room that night, I fell asleep thinking about that time of the month. When had I had it last?  We hadn't tracked in a while and I hadn't had pain in a while. That was weird.

That night, I had a dream... I was holding a baby and Jim was standing behind me. The girls from the cottage we had visited were standing around us and Christina, the little girl I had connected with, was reaching up to hold the baby. It woke me out of a dead sleep. I woke Jim up at 3am and said, "When we wake up, can you go buy a pregnancy test? I'm sure it's nothing, but I can't remember when I had my period last." I couldn't get back to sleep without thinking about that dream, so I had Jim to go the drug store at 5am for a pregnancy test. When he returned to the room, I told him that I would probably get my period as I peed on the stick, but that the dream had been so real, I just had to know for sure. In the back of my mind, I knew it wasn't likely...that it was probably just the stress of travelling, my hectic New York job, newlywed life, a million other things...it couldn't be that I was pregnant!  I couldn't even have kids and had pretty much come to terms with that (if "coming to terms with that" looked like ignoring it and going on with life as usual).

I peed on the stick, waited the required time and when we looked, there were two lines...we were having a baby!?!?!?!? We were also offered the houseparent position that day, so in one day, we found out that we were moving several states away and going to become parents 9 times over - to 8 girls in a group home and to one growing in my uterus - our miracle baby! God was on the move in our lives and we were enjoying the journey...

And So It REALLY Begins

Jim and I met in a bar in New Jersey on March 11, 2000. During our very first conversations that evening, we shared with each other baby names that we wanted for our (individual, not OUR/together him and me, I mean... we just met that night!) children someday. In a whirlwind of love, we moved in together 6 months later as my landlord sold the house I rented in and I had to move out. Later that year, at my regular annual gynecologist visit, my Pap test turned up abnormal. As a chain-smoking, birth-control consuming, premarital-sex-having young woman, I knew that I was at higher risk for different kinds of cancers and other diseases, I mean...I got the package inserts with my monthly prescription! I was a little bit freaked out, but to be honest, I still felt a little bit invincible in those days. I didn't even tell Jim about the abnormal pap or the subsequent office visits and tests, I mean, we were still a new couple and weren't even passing gas in front of each other yet. I was certainly not telling him all about my gynecological...whatever this was! In my mind, it was just a routine thing. 
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In November of 2000, I had my first transvaginal ultrasound in an OB/GYN office in Hackensack, NJ. Then they performed, what I didn’t even know at the time was, a cervical biopsy. They informed me that the tests had revealed that my ovary was polycystic and turned in a weird way. It was unlikely that I would be able to have children as they suspected there might be other stuff happening in there. I had no idea what any of that meant, but getting pregnant was not even on my radar at the moment. I left the office that day and went straight to the bar to meet Jim. There, we proceeded to get rip-roaring drunk as I told him that I might as well come off the pill since there’s little chance of pregnancy.
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I had forgotten how bad my monthly menstruation had been. Boy…had I forgotten. I had been on and off the pill for about 8 years – off when I’d forget to pick up my prescription or would forget for a week or two at a time to take it…I was a horrible daily medicine taker! At the end of 2000, I stopped taking the pill. Pain started creeping back up over the next few months as 2001 rolled in, but I was still living a rather hard lifestyle fueled by alcohol and drugs, so I paid no attention.
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Jim and I got engaged in May of 2001. We never talked about having kids after that very first night that we met. I don't think either of us were thinking along those lines at that point. I was pretty sure he'd heard me in the bar that night when I told him the doctor said I couldn't have kids... sure, we might have been a little wasted, but we were all good...right?   
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On September 11, 2001, two planes flew into a building about 5 miles away from our home. Little did we know how much our lives were about to change...

Where Do I Begin?

As I thought about starting this blog, I had to decide where to begin. I decided (with the lyrics from Julie Andrews as Maria Von Trapp in "The Sound of Music" running through my mind) to "start at the very beginning, a very good place to start," so here goes nothing...
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From the time I got my first period at age 13, I had abdominal pain with every cycle. I thought it was a normal part of being a girl. Everyone around me complained about cramps and as I had no real baseline data for what was normal and what wasn't, I assumed that it was just a part of life...that I should just pull up my big girl panties lined with three pads and move on, hoping it wouldn't leak through.  Although it did...often...because in addition to severe abdominal pain, my flow was a BEAST. I'm not going to go into much more detail than that because...well, because that would be TMI.
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On a side note, I understand that this blog may often contain a little bit of TMI for some people. I'm not going to apologize, I'm just going to ask you to move on. Endometriosis is a disease that is extremely misunderstood by those who have not experienced it themselves. In order to attempt to help people understand even a fraction of what I have experienced in my nearly 30 year struggle with chronic pelvic pain and endo, I may share details that some deem to be TMI. It isn't a pretty subject and I'm not going to sugar coat it.  I will, however, attempt to cover it in a bit of humor as I walk the fine line between giving you a window into my daily reality and offering up TMI. This disease is not for the faint of heart.  Though I was faint of heart when I started on my endo journey, by the time I got to a place of acceptance that chronic abdominal pain will likely be something I endure for the remainder of my days here on Earth, my heart has become much stronger. #EndoStrong
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But I digress...
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Where was I? Oh yeah...painful, pad-overflowing periods... oh, the good old days. I thought it was normal...until I didn't. I remember going to the doctor and being tested for mono many times as a teen. Even though I hadn't kissed any boys, the left side of my abdomen was chronically hurting and I was convinced my spleen was on the verge of exploding. Every time I was tested, it came back normal. I plodded on and assumed it was all just part of "every woman's battle" - my monthly nightmare that didn't stop hurting in between menstrual cycles. There was always a layer of pain in my abdomen.
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I graduated from high school and was off to college - still with pain and heavy cycles. These years were rather blurry for me with sleep deprivation from all-nighters and the fuzziness of binge drinking and recreational drug use (that information may be new to some friends and family, but I am not trying to live on anyone's pedestal - I was not a "good girl" in my college years). When I look back through my entire life with abdominal pain, that was pretty much the only time it didn't take me down...the only time I can't even recall having constant nagging pain in my abdomen or any pain at all outside of my monthly menstruation. I don't even think I had one mono test during my entire college career! Maybe it was my substance use that numbed me just enough not to care... More than likely the reprieve came as a result of a routine Pap test appointment in my second year of college at the college clinic. The provider told me that taking birth control pills might help minimize my menstrual flow, so I jumped onto that bandwagon immediately! Although I had never heard the word endometriosis at this point in my journey, in addition to decreasing menstrual flow, birth control can also suppress the growth of endometriosis. Whatever the reason, the drugs or the birth control, I was revelling in my new life with two day periods and minimal flow while enjoying the time of my life with friends. I didn't think about the pain in my abdomen again until I came off the pill and stopped using drugs and alcohol regularly - about 10 years later (ok, so I wasn't a "good girl" a little bit BEYOND college, either) after meeting and getting engaged to my husband, Jim.
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I feel like I should stop here for today, but I'm a little bit worried about leaving 10 years of substance use out there... We all have our skeletons and our mistakes and I'm not going to worry about anyone else's judgment. It is what it is... It's my story and I can't change it. God has forgiven me, redeemed me and even given me the opportunity to use my experiences during those lost and broken years to help others through my ministry to youth in crisis and in future substance abuse prevention efforts.
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And with that, I am signing off for today but this is definitely TO BE CONTINUED...

Things I Have Not Missed

I started this blog because I felt it was important to document my endo journey, once and for all, and to be transparent for endo sisters who may come behind me in dealing with this excruciatingly painful disease. As an advocate for health and wellness, it makes me sad to think of all the women who are living with endometriosis in the world... who are misunderstood and misdiagnosed... who go through years and decades of unexplainable and intolerable pain... who aren't taken seriously and who fight tirelessly just to be heard and to find a way to live with this illness.
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I have recently been having endo-like pain again... four years after radical hysterectomy. I will use this space to share this new chapter in my endo journey, to recap the hell I have already been through and as an outlet for some of my pain and frustration.
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Today, I bring you:

Things I Have Not Missed In My 4 Year Reprieve From Endo/Pelvic Pain

1. Doctors who know very little about endo that seem to think they can fix everything for me in one office visit even though 20 years and at least that many doctors haven’t been able to do that yet. 

2. Being told that if I work on my posture, it will improve my pain. Ummm, I’m a little hunched over from having an alien stabbing me from the inside for more than two decades. 

3. People saying “bless your heart” when I share why I am in excruciating pain. 

4. Doctors who suggest pain medications that I have already tried unsuccessfully and say “we’ll try this in combination with 5 bazillion mg of Tylenol and see if that helps. Please call if it doesn’t.” Ummm...ok, but what's with the "WE"? Are you in pain, too?

4.1 When you call them back in pain and tell them it doesn’t help they say, “well that’s the best we can do at this stage.” THEN WHY... FOR THE LOVE OF ALL THAT IS HOLY, DID YOU TELL ME TO CALL???!?!!!

5. Having to go to the ER to get sufficient pain relief.

6. The doctor/hospital bills from having to go nuclear (AKA to the ER) for proper pain management. Basically, I just paid $250 for 15 Percocet. 

7. Starting over with a new doctor. How I hate having to relive my endo trauma with a new provider by telling them my entire 5000 page medical history every time I see someone new. 

8. Worrying that people think I’m some kind of drug seeker when I really just want to stop hurting so damn much!

9. Doctors pointing out other medical issues while I’m there about my endo/pelvic pain. “Wow, your BP is really high. Maybe we should talk about medication.” Are you kidding me??? It’s high because I am in excruciating pain and you don’t know how to help me! 

10. “You don’t LOOK sick. You look GREAT!” So, now I’m forced to wear pajamas and not comb my hair for a week so you believe me???