You're Fired

After riding the Lupron roller coaster for 9 months, my OB/GYN suggested a 4th dose, but I finally had the courage to decline. Things hadn't improved since the 3rd injection. In fact, since receiving that dose, I had been fired from my job as Property Manager for the duplex community that we had managed since 2005. It was the ONLY time in my life that I had been fired, but I really wasn't able to keep up and had no certainty that relief was anywhere in sight. It was humiliating and made me feel completely worthless, but there was nothing that I could do about the situation.  I was pretty much bed-ridden 90% of the time between my endometriosis pain and all of the different side effects that were brought to me courtesy of Lupron.

My husband mentioned that he had read online about a center in Atlanta (about a two hour drive for us) that specialized in endometriosis and suggested that I give them a call.  After reaching out to them and getting all of my paperwork in order, Jim and I drove to Atlanta on June 24, 2008 for my first appointment with Dr. Robert Albee at the Center for Endometriosis. Because insurance reimbursement rates are so low, many specialized providers opt to keep their practices on a self-pay basis meaning that they are considered out-of-network for private insurance. What this meant to Jim and me was that most of my time with Dr. Albee would need to be paid for completely out-of-pocket and considering that I had been out of work for almost 7 months and Jim was back working in full-time ministry at Bethel Bible Village, our pockets weren't very flush with cash. Regardless, we felt that it was important to pursue this avenue in the hopes of regaining some quality of life, so we prayed and pushed ahead knowing that it might mean incurring debt. Dr. Albee suggested excision surgery but wanted to wait until the Lupron was completely out of my system prior, so we scheduled my 3rd party in the OR for September 10, 2008.  We decided that during this surgery, he would do an aggressive excision of any endometriosis that he found and also remove my left ovary which had historically been the most polycystic.

Jim and I traveled to Atlanta for my surgery in September and spent the better part of a week down there for pre-operative appointments, pre-surgical bowel prep and my surgery itself. Dr. Albee only found a few spots with endometriosis, likely because I had been in medical menopause for most of the year since my previous laparoscopy, but my left ovary was again riddled with cysts. He also excised significant scar tissue and adhesions. He was confident that I would no longer have pain from my endometriosis.

I followed up with my primary care provider at home two weeks later and was still experiencing surgical soreness, but at the beginning of October, about 3 weeks post-op, I felt fantastic and began to think that I was around the bend. On October 18, 2008, though, I woke up with a different kind of pain...one that prevented me from sitting upright normally.

The Endo Diary: How Printing a Coloring Page Means I Can't Go to Church Today

Soooo, I am still a bit derailed from my endometriosis story, but I figured I would use this pause to add a new recurring feature to the Pain In The Rear Endo blog: The Endo Diary. This occasional segment will provide a glimpse into a day in the life of someone living with endometriosis and chronic pain. Because we don't always 'look sick," people don't understand how every choice we make affects the remainder of our day and possibly subsequent days/weeks/months. If you haven't yet, you should familiarize yourself with the Spoon theory by Christine Miserando. Basically, she sums up each day as having a limited number of spoons available and every activity costs you a certain number.

The Endo Diary segment of this blog will highlight the everyday choices (spoons) that we take for granted when we are feeling healthy and well and exemplify how one choice can impact the rest of a day filled with chronic pain from a disease that we are unable to control. And so, I bring you the very first Endo Diary entry:

HOW PRINTING A COLORING PAGE MEANS I CAN'T GO TO CHURCH TODAY

First, a little context: I have only been able to go to church twice in the past two months and am leaving on Tuesday for 4 nights away from my kids and home to have surgery with an endometriosis specialist 6 hours away. I had a couple not-so-bad days on Friday and Saturday.

This morning, I woke up in excruciating pain.

Worse than I have had in several days.

Of course.

Why?

Because I have some place to go today.

I wallow in bed for an hour as I wait for pain medication to kick in.

Coffee.

Drag myself upright and brush my hair.

Thankful the brush is within arm's reach on my nightstand...

and that I took my shower last night.

Get dressed: Two words, but 30 minute process for pants, shirt,

socks and earrings...must have the earrings.

Back on heating pad - 45 minutes until we leave.

Feel like I ran a marathon.

Doze off for 15 minutes.

Husband needs print-out of coloring sheet for children's church lesson.

Printer is "offline."

Printer is "processing."

Printer is "realigning."

Printer is going to die today.

10 minutes sitting upright in office chair.

0 print outs of coloring sheet.

Stabbing abdominal pain.

Sharp, shooting groin pain.

Back on heating pad.

Not going to church.

Colon Blow

I'm pausing once again on my personal endometriosis journey story to bring you this special "out of order" edition from my current situation. A lot has happened in the 10 years since my Lupron Roller Coaster ride and I promise to catch you up, but today, I had a colonoscopy...the second in my endometriosis journey.

Last night as I went through the second ring of hell known as "colonoscopy bowel prep," I was reminded of an old advertisement skit from Saturday Night Live for a breakfast cereal that came out in November of 1989 and featured Phil Hartman. It was for a fake cereal called "Colon Blow" which is EXACTLY how I felt. The YouTube link for the video is below the photo, so I'll wait here while you laugh for a minute.

Colon Blow Ad - SNL

Now, I am not going to be all TMI and share with you the gory details of my personal bowel preparation, but I will share a few photos.  If you are a bowel prep virgin and want a hilarious introduction to colonoscopy bowel prep, I HIGHLY recommend you read the article by Dave Barry entitled "A Journey Into My Colon - and Yours." For now, here are a few photo highlights from my prep yesterday - which began at 8am.

Let’s get this #colonoscopy party started!

Magnesium citrate: it's what's for breakfast.

Every 10 minutes, starting at 6pm... "Bottom's up!"

#MakeItFancy #BowlPrep #InAWineGlass

OMG! 2-1/2 hours later and I am STILL DRINKING!!!

#NeverEndingBowelPrep

Yes, I drank my bowel prep out of a wine glass. Yes, for a few minutes after the 2-1/2 hour mark, I felt like I wasn't going to make it. Yes, I just kept pounding that cupful down when my phone timer went off every 10 minutes. Yes, I spent most of the night in the bathroom and/or running to or from it.  And yes, by morning, I was exhausted, but clean as a whistle!  

I had to arrive for my colonoscopy by 7:15AM which was fine by me since I hadn't had a cup of coffee in over 24 hours and I had quite a caffeine-free headache raging. The sooner I got in, the sooner I could get out and have a cup of café au lait (with dairy for my non-French speaking readers). Dairy was a "no-no" during bowel prep day and I was jonesing.

I'll spare you the minutiae of the day, but when my surgeon came in to talk with me before I got rolled back for the scope, she noted my endometriosis history and I saw it in her eyes: the knowledge of the pain...the understanding. She didn't say that she had it, but I could tell that she was an #endosister and it gave me great peace and calm. She had to examine my abdomen before the procedure because I hadn't met with her previously, but she was gentle and not callously pain-inducing or careless about it as some providers are. She apologized for hurting me and I could see in her eyes that she knew my pain personally. They got me hooked up to an IV and rolled me back. I joked with the nurses - who I knew both, from working at the hospital and because, when you live in a small town, you know everyone. I fell asleep to the doctor saying, "I'll let you know what I see when you wake up."

What seemed to be just a few minutes later, I was awake and the surgeon came in and gave me the diagnoses of the day: mild diverticulosis and a tortuous colon (one that has an excessive amount of sharp bends and turns in it). Neither of these things, she suspected would be significant enough to be the cause of my pain, but the tortuous colon looked like it was caused by external (to the colon) scar tissue or adhesions, some of which could be endometriosis. Her words to me as she left, "I believe that it is your endometriosis or some type of adhesion that is causing your pain," gave me such a feeling of encouragement. I know those statements can only be verified by laparoscopy, but hearing someone in the medical profession validate my pain instead me having to fight to be heard or understood, was a welcome change to the status quo for me. 

Most of us who deal with an endometriosis diagnosis constantly need to defend ourselves...have to keep asking questions, push for tests, medications, surgeries, specialists, you name it... It truly shouldn't be that hard, but it is. 

Today, as I left the one day surgery building, I felt lighter. Physically, I was 3 pounds lighter from the bowel prep, but I also felt emotionally lighter. I feel confident that the laparoscopy I have scheduled with the endometriosis specialist for next week is the right direction to take. This assurance has removed the weight of worry that no amount of Colon Blow could have rectified.

Lupron Roller Coaster

My second official "Party in the OR" went off without a hitch on October 1, 2007. My doctor was surprised at how much of the endometriosis had returned in the less than one year since my previous surgery with her, but she "got a lot of it" and also "left some behind because it was too close to the ureter." At the end of the procedure, she injected me with a medication called Lupron. 

What I would come to find out in late 2017 was that Lupron was originally designed as a chemotherapy drug and approved for the treatment of prostate cancer in 1985... that it went on to be approved by the FDA in 1990 for the treatment of endometriosis, and in 1995 for the treatment of uterine fibroids. The drug works by reducing the amount of luteinizing hormone (LH) and follicle-stimulating hormone (FSH) produced in the body. In women, these hormones are responsible for ovulation and the regulation of the menstrual cycle. For those who are currently menstruating, Lupron puts them into a drug-induced menopause. At the time, despite not knowing any of this information or even understanding how it would work, the thought of no longer having a period was delightful... but there was a catch. "You can only use it for 6 months," my doctor informed me in the midst of semi-casual office banter one day. "It's too dangerous beyond that." To normal people, this statement alone may have shot up some red flags, but in the name of pressing on and living a pain free life, this red-headed soldier put up her blinders and kept on plodding.

My doctor scheduled me for my second injection of Lupron for 3 months later which fell on New Year's Day so, I kicked off 2008 with another giant needle in the "Rear Endo" on January 2 when the office reopened. During that visit, we talked about how I was beginning to have some night sweats and a few infrequent but tolerable hot flashes. She sent me home with a prescription for a hormone add back pill called norethindrone which I could fill and use "if any of the menopausal symptoms became intolerable." 

About two weeks after my second injection, I woke up with a horrific headache. Perhaps the most skull gripping one I had ever experienced in my years to date. I did everything I could to get it under control, but spent the majority of three days in a dark room with compresses on my head and eyes trying to manage it before I broke down and went to the ER desperate to get on top of the pain. Two more medical visits - including one to an ENT specialist - happened before someone realized that the headaches were a side effect of the Lupron. I was prescribed Elavil, an anti-depressant that had been found to successfully prevent migraines when taken daily. I was also given Imitrex for when I got a migraine and was told to begin the norethindrone as my hot flashes and night sweats began to increase following my second Lupron dose. Large sunglasses became the norm and I wore them indoors and out to help with the light sensitivity that would set me up for a two day migraine.

About a month following my second Lupron injection, I sat down on my couch and jumped back up quickly as I felt something sharp jab me in the hip and leg. I searched the couch for the offending pen or utensil... to no avail. The pain didn't stop. Every time I sat or moved, I felt like I was being stabbed in one joint or the other. A referral to an orthopedic led to a cortisone injection in each hip as well as a standing 3 times per week date with the local physical therapist.

About 6 weeks following my second Lupron injection, I was standing at my stove making lunch for my daughters when I began sobbing... for no apparent reason. My oldest (12) came over to find out what was wrong and I quickly lashed out irrationally, "Leave me ALONE!" My husband swooped in from the wings and hugged her close as he pulled her out of the room explaining that I wasn't quite myself. I felt horrible and nasty. 

About 2 months following my second Lupron injection, I began having heart palpitations and shortness of breath that I could not explain. I had to wear a halter monitor for 4 days to monitor my heart rhythms. Further testing indicated that I had hyperthyroidism. I was prescribed Tapazole.

About 10 weeks following my second Lupron injection, I started to experience chronic abdominal pain once again. My doctor prescribed me hydrocodone to help with breakthrough pain. 

I looked at the calendar and saw that my 6 month post-operative appointment was less than two weeks away and I could not be more ready! I was now taking norethindrone, Imitrex, Tapazole, Elavil, calcium, vitamin D, and hydrocodone as needed for pain, attending PT 3 times a week, and having trouble just walking to the bathroom. 

I got to my 6 month post-operative appointment and collapsed in the waiting room chair - relieved that my Lupron nightmare was about to begin its upswing. I made it through 6 months and it hadn't helped. I was a hot mess, but at least I knew. Lupron didn't help me. 

I got into the examination room and got into my exam gown and the doctor came in with the nurse. The nurse pulled out the all-too-familiar needle and I felt myself go pale. "Ready for your Lupron injection?" she asked.

"I thought I could only use it safely for 6 months," I implored. 

"Yes, all of the doses need to be administered within 6 months. Today is 6 months and your final injection has been ordered, special delivered next day air and already billed to your insurance," they explained as I sobbed at the prospect of another three months on the Lupron Roller Coaster. In essence, they guilted me into accepting that final injection that day and of course, in blind obedience, I did.