Financial Realities: Living with Endometriosis

My problems with endometriosis began my junior year of college; I was on the phone with a friend when I felt the most intense, stabbing pain in my pelvis. I grabbed the edge of my vanity for balance and dropped the phone as I cried out in pain. The pain was never that intense again, but it began to feel as if a tiny leprechaun was sitting on one of my ovaries. The leprechaun squeezed and sat deeper with each passing day, sometimes the pain was so articulate it felt as if she were dancing and stamping his feet around on my bladder.

A trip to the gynecologist, which was still a new-ish endeavor for me back in 2008 revealed I had a cyst on my ovary the size of a golf ball.

“It will either resolve itself in a week or so, or we’ll need to schedule you for surgery for removal.” My doctor told me matter-of-factly. I doubted it would go away on its own, the leprechaun had proven to be a nasty mistress so far. Sure enough, two weeks later the cyst had nearly doubled in size and surgery would need to happen as soon as possible.

A week later I sat in my doctor’s office for my post-op visit and he beamed at me, “I have good news!”

I smirked and raised an eyebrow.

”We ended up having to take over a third of the left ovary in order to get the entire cyst, but the good news is your cyst is benign and not cancerous, like we had previously thought.”

“Hooray!” I cheered, and rose to put my clothes back on. The paper gown was chaffing me, and I had spent the past week biting my nails in anticipation of the results. I was anxious to hurry home and nap away the last few days of my summer break.

“There is some other news.”  He began and motioned for me to sit back down.  His face didn’t communicate any concern, but my heart began to race.

“During your surgery, we found some endometriosis on your uterus.” He held up my chart to show me a picture; all I saw was a big pink blob with brown acne scars on it- endometriosis, apparently.

looks like this, kinda.

“There was also some of it on your bladder and fallopian tubes.”

“How long have I had it?” I asked.

“Endometriosis is extremely hard to diagnose, nearly impossible without surgery. We only found out because we were already in there removing a cyst. I believe the endometriosis is what was causing you so much pain.”

“ Is there a cure?” I shivered at the thought of the painful leprechaun coming back and resuming her anxious dance.

“Unfortunately, no.” He said and looked sad. He seemed uncomfortable, he was a doctor whose bread and butter was birthing babies, not counseling younger women with reproductive issues.  “We were able to burn it all off, but we can’t guarantee it won’t grow back. There are some things we can do, like hormone therapy, and menopause.”

“Ok…?” I said, my head suddenly so full of worries and thoughts. I had so many questions, but couldn’t seem to form the words. I hadn’t brought anyone with me, and suddenly wished I’d had.

“I think to give you the best chance for a family in the future we should try Lupron, followed by continuous birth control. If we do those two things we have a good chance of keeping the endometriosis at bay.”

“Is there anything else I need to know?”

“You should be prepared to know that endometriosis does make it hard to conceive. I know you are young still and having a family is probably the last thing on your mind.”

“Is it….impossible?”

“Not impossible, but difficult.”

Life Since Then: Living with Endometriosis

The big E has become a part of my day-to-day reality since then. The whole “not being able to have kids” probably screwed me up most of all. I think that children look and act like little aliens: I’d never wanted them  until I was told I might not be able to have them. For a long time I swore off relationships because I was certain no man would want to get serious about a girl who was practically barren. If I had a dollar for every night I’ve spent crying about this stupid, enigmatic disease I could retire.

Despite my best attempts the last five (five!) years, the endometriosis did grow back. I feel it some days more than others, but usually there is always a dull, persistent achy pain in my lower back. Kind of like having menstrual cramps every.single.day. of your life. It’s gotten better in the past few years, but it is still a large part of who I am.  Endometriosis was something for me to be genuinely heartbroken and upset about. Maybe I didn’t always handle my feelings in the healthiest of ways, but it forced me to put my actions and relationships, particularly the unhealthy ones I had with men in perspective.

Since being diagnosed I have spent about 3k on doctors visits and medicine.This estimate doesn’t include the initial surgery, which my parents were kind enough to cover since I was still in school. Having endometriosis also means I have to see the doctor every six months or so, and can never really be without health insurance. This isn’t one of the main reasons I quit being an actor, but all of the insurance-less job prospects definitely landed on my “cons” list.  I try not to think about what I would have done with that money instead because it makes me angry, but all-in all 3 grand in five years isn’t the worse damage I’ve done money-wise.

What does this mean for my future as a wife and mother? I’d never admit these things out loud (I’m too cool for that shit.), but these are roles I do hope to play some day. As the “age” where those goal are supposed to be met keep inching closer and closer as the years march on it does make me contemplate my life choices. For me there will be no happy accidents or “Trying” to have a baby. Like most everything else L Bee does, it will have to be deliberate. I have also been counseled on the fact that I will most likely need expensive (and I do mean…expensive) help conceiving: uber fancy fertility drugs and money for egg retrieval and implantation surgeries. Some days I wonder if having a child is worth all of that money (even adoptions can be expensive), and then I get mad again because I am single and 25 and shouldn’t even have to be worrying about things like this.

Endometriosis has forced me to be more responsible with money. Even if it was just something small like making sure my medical bills got paid on time, or making sure each new doctor had my up-to-date records. Everyone learns from their life, you’d have to be a complete idiot not to, but every once in awhile something happens that makes you become a bit more of an adult overnight. Getting diagnosed with endometriosis did that for me.

When I worked for a hedge fund in NYC I had the CADILLAC of health insurance: you’d be hard pressed to find something they did not cover. Upon seeing this and working through my medical history my gynecologist there suggested I go ahead and have some eggs frozen.

“Why?”

“25 year old eggs are better than 35 year old eggs. I don’t want you to get down the road and hit another speed bump when we know about this now and can plan.”  I felt like crying, but I rolled up my mouth and tried not to laugh.

“Farm fresh eggs….” I replied.

“Don’t make jokes, Lauren.”

He was the best doctor I’d ever had, and we had a great rapport.  Losing him as a doctor was one of the biggest bummers of leaving the city. After my insurance I would have had to pay the deductible on the surgery and an additional 1k a year to store the eggs in a refigerator facility somewhere, about 5k after it all was said and done. I had that kind of money back then, but upon doing more research I found that the eggs have a hard time implanting after being frozen unfertilized. All that money for something that would only maybe work?

“Do you have a special fella in your life? A gay guy or a close male friend? We could freeze some embryos, just in case.” The doctor asked when I raised those concerns. I rolled my eyes, because it was all getting a little bit too Katherine Heigel romantic comedy for me, so I backed out. Although I did have my really good friend,Ivan, sincerely offer me his genetic material (and it was one of the sweetest moments of my life!) I realized in those moments I wanted to cross that bridge when it comes, preferably with a husband or soul mate in tow. So for now I’ve decided to leave it up to the fates: if it is going to happen for me it will happen, because I am a deliberate person.

That’ll teach that fucking leprechaun.