I woke up screaming.

Or at least, I was told I was screaming. I only remember crying.

I was on a gurney in the post-op recovery area (PACU) after having an exploratory laparoscopy to determine the source of my persistent pelvic pain. I’d had knee surgery the year prior and recalled that waking up from that surgery was not like this.

About half a dozen people surrounded my bed, trying to calm me down. I was in some of the worst pain I’d ever experienced in my life. And I’ve been through some stuff. I was shivering from both the anesthesia and the fact that I was positively freezing. All I could think of to say to anyone was, “I’m shaking.” I ground the words out through clenched teeth. The tremors only made my pain worse, as I was tensing up after having just had my abdomen and pelvis cut open. Three little holes, but the pain was horrific. I remember a nurse saying to me, “You’ve had your appendix taken out, honey.” I was covered in a Bair Hugger and put under so many warmed blankets, over my body and wrapped around my head, that only my face was visible. Within minutes, I drifted back off to sleep as I was administered large doses of morphine. I spent two more hours in blissful unconsciousness.

How did I come to find myself enduring this?

Getting the Diagnosis

It had all started a month and a half prior, in April 2014. On Good Friday, I was hospitalized for sudden onset pelvic pain that was misdiagnosed as a tuboovarian abscess (TOA). (This is apparently the diagnosis radiologists come up with when they have a woman with pelvic pain whose STI swabs come back negative and they don’t have an identifiable ovarian cyst or other pelvic pathology.) I was convinced my appendix was somehow involved, but what did I know? I was given antibiotics that helped a little, but didn’t eliminate the pain. At that point, I knew I didn’t have an infection.

After doing some research on my own, the lightbulb came on. At my follow-up appointment with my new OB/GYN, who had overseen my care in the hospital, I boldly announced I thought I had endometriosis. As an experienced OB/GYN, he immediately agreed with me once he’d asked me some questions about my medical history. He suggested a diagnostic laparoscopy to find out for sure.

So I found myself crying in the PACU on June 2, 2014.

Once I awoke from my extended post-operative nap, the hospital staff did everything they could to shove me out the door as quickly as possible. I was revoltingly nauseous, but the hospital was out of the only antiemetic that worked for me. Yet they wouldn’t give me oral pain meds while I was nauseous. So they finally tossed up their hands and decided to discharge me, nauseous and with uncontrolled pain. Strike one.

On the way home, as I tried not to upend my stomach on the dashboard, my husband told me the outcome of the surgery. My OB/GYN had found and cauterized endometriosis on my left uretosacral ligament and the right cul-de-sac (the anatomical space between the rectum and vagina, also known as the Pouch of Douglas.) The procedure itself was called ablation, in which a heat source was applied to the lesions and the tops of the cells were burned. My appendix had to be removed by another surgeon because it was enlarged and somehow wedged in between my right ovary and Fallopian tube. When the surgical pathology came back, it revealed that endometriosis had basically destroyed my appendix, resulting in something akin to a chronic appendicitis. Imagine that.

Yet overall, I was relieved. My pain had been vindicated. The cause had been found (it was endometriosis and my appendix! Right on both counts!) And, most importantly, the endometriosis had been taken care of.

If only it had been that simple.

Delayed Recovery?

My recovery was initially complicated by a UTI. Not uncommon, even though it was my first one. It was only when the urine culture came back as group B strep (GBS) that I realized the infection had been caused by the Foley catheter inserted into my bladder during the surgery. Since about 25% of women are colonized with GBS in their vaginal and rectal areas, this means that somebody didn’t do their job properly when preparing to insert the catheter during my surgery. Strike two.

Two weeks after the ablation surgery, I had a post-op visit with the general surgeon who had been called in mid-surgery to remove my appendix. He was a very kind man. When I explained to him that I was still in fairly significant pain, he said I should keep improving because by this point in recovery, most patients feel “80% better.” I felt I was at about 40%, but since my body had been through a lot, I figured maybe I was just taking more time to heal.

A month after the ablation surgery, I wasn’t feeling any better than before the surgery. When I saw my OB/GYN, he said it was possible that I had “microscopic endo” that he hadn’t been able to see that was now flaring up. My further care options were Lupron, a drug that would put me into temporary menopause to delay the growth of more endometriosis, or to take pain meds to control the pain until I got pregnant. Once pregnant, I should feel better for at least the nine months of pregnancy. After that…well, it was anyone’s guess. As a pharmacist, I knew enough about Lupron to refuse to let that drug anywhere near me. I knew what the side effects were and that they could be permanent. So it was option two for me. Painkillers until pregnant. What a treatment.

In the middle of July, only six weeks after the ablation surgery, my husband and I were visiting his parents when my pain escalated with a vengeance. Sleep was nearly impossible. My heating pad wasn’t touching the pain, despite using the “surface of the sun” setting. Percocet was barely taking the edge off. It was a sad and rude awakening to me that perhaps something was still not right.

My recovery wasn’t delayed. I had recovered in six weeks as much as I was going to. Deep down, I knew the reality: the ablation surgery had failed.

Downward Spiral

Within a few weeks of the sudden escalation of pain, my quality of life was virtually nonexistent. I changed my work schedule to work exclusively night shift at the hospital pharmacy, which would allow me to have every other week off. During my seven days on, it was all I could do to drag myself out of bed in enough time to get in the shower before work. I would even shower again when I got home in the mornings to help decrease the pain that had been steadily escalating as each shift dragged on. I brought my heating pad to work and sat with it on my lap for the entire ten hour shift while I hugged a pillow for further comfort.

I thought I was doing a good job fooling everyone about how much pain I was actually in. But one day, when I said I was feeling not too bad, one of my co-workers said, “I know you’re in pain. I can see it all over your face.”

During my off weeks, I was almost completely bedridden. I couldn’t clean. Doing laundry consisted of running everything through the washer and dryer and then letting the clean clothes sit in laundry baskets. I don’t think I folded a single piece of laundry all summer.

Near the end of August, I hit rock bottom. One day, I spent hours slowly getting ready to attend a friend’s wedding. As I went to put on my dress, I was in so much pain I crumpled to the closet floor in tears. The thought crossed my mind that maybe it was time to end things. If I took all the painkillers I had, maybe my last conscious moments would be free of pain…Instead I instructed my husband to lock my pain meds in the safe and take the key with him when he went to the wedding without me.

I couldn’t do it anymore. I was bedridden with pain. I was passively suicidal. I had no quality of life whatsoever. I needed relief. And I needed to find out how to get it.

A Way Forward

It was around this time I started doing more research about endometriosis and read the word excision for the first time. This procedure was considered the gold standard for treatment of endometriosis. It involved cutting around and underneath the endometriosis lesions, lifting them out and leaving no cells behind to grow back. By reading through my operative report, I realized that the procedure done to me, ablation, just burned off the top of the lesions. But since there were still endometriosis cells underneath the now charred tissue, the lesions would just grow right back in the same places, requiring repeated surgeries over and over and over again. The thought of living like that for the rest of my life made me despair. I didn’t want anything to do with ablation ever again.

But now I knew there was a better way! Excision! The word itself sounded like gold to me. Research told me this was such a difficult procedure that few surgeons were capable of doing it well. One location offered a free records review and a phone consultation to weigh in on your case. I decided I had nothing to lose.

I requested and gathered my hospital and surgical records. As I was more closely reviewing my operative report from my ablation surgery in June, I noticed something disturbing. I examined the part of the report that recorded every medication administered at every point during the surgery. In the entire two hours of the surgery, not a single pain medication was administered. I received no pain medication until I woke up screaming and crying in PACU.

Strike. Three.

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