Our mission is to increase endometriosis awareness, fund landmark research, provide advocacy and support for patients, and educate the public and medical community.
Founders: Padma Lakshmi, Tamer Seckin, MD
Donate Now

Dear Younger Me: What I Wish I’d Known About Endometriosis 10 Years Ago

Dear Younger Me: What I Wish I’d Known About Endometriosis 10 Years Ago

A few days ago, I was in the middle of a restorative yoga class, and three hip-openers in, when I began to reminisce about my 10-years-younger "endo me."

March marks an emotionally and physically painful anniversary. On Mar. 2, 2008 at Washington Dulles Airport, I said goodbye to the man that was my husband for what would be the last time face-to-face. He was about to serve a year in Afghanistan, and I was boarding a plane to Colorado. Within three months everything would be different.

By the end of May, I found myself checking into a hospital for my scheduled laparotomy, my mom and my sister by my side. Every time the door to the waiting room swung open, I would turn thinking he was going to show up for this, but deep down, I knew that he would not be coming that day. I went over some paperwork and crossed out his name as my emergency contact and added my mom. And then I lost it; I could not stop crying. They asked if we should reschedule, but I said no, I had to get this done while I still had insurance.

The past few months before surgery day had been a whirlwind. I finally received a pelvic ultrasound that I had asked for two years earlier. And as I had suspected, it confirmed my worst fears: masses on my ovaries. Big ones. I found a doctor in Colorado, immediately scheduled an appointment and had my records transferred from Virginia. With my troubles of getting pregnant and my mom’s history of endometriosis, the doctor could almost say with certainty that I had endo. She also recommended that they do not perform the surgery laparoscopically, but rather make a 6-inch incision on my lower abdomen, above my pubic hairline. We scheduled surgery for May 29, and I started Lupron injections right away.

Shortly after that, my husband called and told me he was divorcing me. Within weeks I was served divorce papers, he had changed his phone number and had stopped responding to email. What was I supposed to do? Go to Afghanistan? Nope. I started taking anti-depressants and Ambien so that I could function. I applied for jobs, but I was hardly their top candidate considering my spotty retail experience and ailing health. But mostly in that time I just thanked the powers that be that I was in Colorado with my family.

So there I was: 27. On the road to divorce. Reproductively challenged. Jobless. What would I say to that girl if I could?

If I could sit at her bedside in that hospital room, I would tell her:

Words have weight, darling. Those stories you are starting to tell yourself about your worth, they have power. If you are not careful, you will manifest years of suffering.

Find someone to talk to, professionally. It isn’t right for a person to carry around all of those thoughts, all of those worries, all of those beliefs. Your body will rebel, it will ring the alarm system.

Hydrate. Sleep. Stay away from alcohol; you won’t find the answers there.

You can’t see it now, but once you start going to therapy, you’ll start to piece together that his leaving in that way had nothing to do with your endo. On the basest level, deep in your bones, you know you two didn’t belong together.

Endo doesn’t have to be a death sentence on your sexuality. Learn about the root chakra, the mula bandha. Yes, you are dealing with psychological trauma to a very private part of yourself. You are worthy of love, don’t wind yourself up so tight you can’t let anyone in.

Learn about food. What is going to nourish you? All the burritos in the world won’t be able to fill the void you feel inside.

Move your body. Eventually, you will find yoga. Gratitude will find its way back into your vernacular. You will also learn the power of your breath. On more than one occasion, and in more than one savasana you will picture a breath so deep it fills your belly and swooshes around what’s left of your ovaries; it will be a white light. Always send love and light to those parts of your body that hurt the most.

Be an active participant in your healing, in your living. Buy the swimsuit. Say yes to the yoga retreat, and when your favorite song comes on, dance. All night long. Feel joy running through your veins.

Know that there will be children—not your own—but nephews and you will cheer for them on their Kindergarten graduation days. Your heart will quietly break a thousand times over, but in a good way, like when you hear their little voices from the backseat singing, “Humble And Kind” by Tim McGraw.

There are going to be days where it feels like your endo is winning, days where you can’t fake your mood, where the pain is unbearable, where you're tired because of the prescriptions you take when you feel downtrodden. You are allowed those days; don’t judge yourself by them.

Life is still going to take you to places you’ve never seen; you are going to meet people you were meant to cross paths with. You really are going to be a completely different person a decade from now, but know that no matter what choices you make, life will keep going all around you, don’t sit on the sidelines for too long.

And for goodness sake, tight hips are good for nothing except storing trauma. Be that weird hippie girl dancer at the concert shows; sway to your own rhythm. Gyrate. Don’t let that stuff settle into your bones, sweep the dark stuff out.

Then I’d tell her I have to get going, but that in a day or two, mom’s going to give you a shower that will be one of the rawest and beautiful moments of your life, and when you check out of this place, and that nurse rolls you past that window full of newborn babies, mom will say everything you need to know in three simple words: “Look straight ahead.”


*Patient stories submitted to Endofound.org are the views of the patients and not necessarily those of the foundation.