The Endo Battle

Looking back I can say the struggle started around 17; it was my junior year of high school. The cramps were so miserable I would stay home. The weird part was how long the pain lasted. It was like marbles were living in my guts for the week before...and then the week after.

I was not diagnosed with any pelvic pain issues for over 10 years. Honestly, I thought my cycles were just worse than the other girls' I knew, and left it at that. Sometimes I would have to lie on the bathroom floor and sleep, from the excruciating pain. They were just cramps, and I just had to deal with it. There were times that I woke up in literal pools of my own sweat.

They started to get worse in my late 20's. Something had changed. There were times the pain was so intense I would fall to the floor. I didn't have insurance, and was taken to the ER one night as a last resort. My friend thought I was rupturing cysts and I thought she was out of her mind. On the way, I listened to her tell me about a relative who'd lost the ability to have children as a result of things like this.

For 3 months straight, the ER doctors were telling me the same story - I had cramps. Take ibuprofen and midol. I had gone back repeatedly, as the pain was getting worse. During the last trip someone on staff thought it might be a good idea to do an ultrasound, where they saw a cyst had ruptured inside my right ovary. It was roughly the size of a large walnut. I was referred to the OB/GYN clinic and it was going to take forever to get in.

The first doctor was hesitant, with everything. She wrote a script for birth control and wiped her hands of me. When the pain did not go away, I called back. I was in tears with a nurse and had determined that I was going to show up if no answers were given. The nurse was so patient with me and asked, "Are you in the pelvic pain clinic?" She thought I had simply called the wrong number!

What. Clinic.

Apparently there was a pelvic pain clinic that one of the physicians ran (and still runs). I could not believe that after 6 months of bitching, crying, etc., I was just learning of this. She switched me over to the right people, and I was booked!

The first thing he accomplished that no one else did - thought in the solution. We were going to tackle what was going on and beat it. He was confident. First, birth control to keep the cysts from forming. He also thought I had endometriosis, and a condition called "interstitial cystitis." Basically, the basket weave of muscles in that area of mine were on permanent lock. Fortunately, though, I would feel a lot of relief with a modified diet.

We first had the standard surgery to confirm Endo, and it was done. The diet was the worst - low acid and gluten free! Let me tell you, it was difficult, but my body felt amazing.

It took some time finding the right type of birth control to fit my needs, but my new Doc was great. Mirena was the most difficult. I fainted leaving the office after "installation," and needed emergency removal 2 days later. I know it works for a lot of women, but I am not one of them! Back to the pill I went, on a rapid cycle version. It worked perfectly.

Doc reminds me of how far we have come in such a short time every visit. There are days when some interns will be with him on the floor, and he's asked for me to share a little of our story. I am (usually) 1000 times better. If I miss a pill, though, my body certainly reminds me, by bringing the marbles back for a few days. Fortunately now, I know ways to cope and handle the short spells. There is always light at the end of the Endo Tunnel.

Rock Bottom, Circa 2011

I was 28, when I woke up that Sunday morning. Coincidentally, it is barely Sunday morning as I write this. I woke up at home, in my bed, with my ex in his room across the hall. We had initially moved in as roommates.

A few days before, I had already hit bottom. I was at home then, too. I was angry with someone, and had decided, "This is it! I'm not taking any more!" I sat on the living room couch with all the lights on, texted him, and grabbed a dull wooden-handled Steakhouse knife from the kitchen drawer.

They were so quick, I had barely any time to begin. Off I went, to be evaluated by emergency services. I knew that I didn't want to die, but I didn't know how to live.

A man came to my bed; I still count my blessings for him. He worked for local behavioral services. He could tell that I needed help, let me go home under some conditions, and there I was. The soon-to-be-ex at home was so mad at the situation, I waited for a cab to go home. There weren't going to be any free rides for this drunk that night. 

One of my conditions was an out-patient program. I walked into the group on my first day, in shock. Everyone went around stating their first names, and what they were hooked on. Then they all stared blankly at me.

"Hey, I'm Carly, and I have a life problem."

Believe it or not, that night still didn't work for me. I figured I could drink around the urine tests and went out a few nights later - a Saturday, the 9th.

It was the bar where my boyfriend still worked, where I had worked previously. I went in, drank beers, danced my ass off, and started a fight.

I remember being walked out onto the street, but face planting in the road is foggy. The ride back is still unclear. I was driven home, and had to break into the downstairs bathroom to get inside.

When I woke up the next day, I felt more shame than ever in my life. Fuck the hangover; I could sleep that off. I went to get ready for brunch  - friends I could not cancel with. "Shit. Where did this black eye come from? How can I hide this? What will my excuse be?"

I found out about a relative passing the day after. It was completely unrelated but plagues me still. Someone I loved died, while I was throwing my life away.

I gave up that day. I waved my white flag, for the next 3 and 1/2 years. 

It was time to get to know myself again; I had to rewrite the script for my role in life.