Endo(and)me-triosis

It's hard to know where to start in this. Do I begin at the diagnosis? At the first sign of symptoms that I ignored for years? Or when the symptoms reached a point where I couldn't ignore them any longer?

First I'll explain what endometriosis is, as I had only a vague idea before being diagnosed.

If you google endometriosis, you'll find the description as "a disorder in which the tissue that usually lines the uterus grows outside the uterus." But what does that actually mean?

Every month a woman of reproductive age has hormones that cause endometrial cells to line the uterus in preparation of pregnancy. The lining of cells is what the egg embeds in after fertilization. When pregnancy does not occur, the cells detach and the woman gets her period. In endometriosis, for one reason or another, the endometrial cells have been introduced elsewhere in the body, usually around other organs in the pelvis.

Because of the nature of the cells, hormone stimulation causes them to line whatever area they can reach. This means normally free-floating organs like the ovaries could be attached to the pelvic wall, or intestines could be surrounded and formed together. Sometimes the cells can be found attached to the diaphragm, lungs, even the brain. But almost all cases are focused on the pelvis and surrounding organs.

Symptoms of endometriosis vary. Some women have really heavy and painful periods. Others have constipation, cramping, pain during intercourse, or just overall discomfort.

My symptoms began years ago, but I ignored them. I was diagnosed with IBS as a teen and most of the symptoms I had were easily explained by that. Until the 5K.

March 18 I started the Lucky Leprechaun 5K. I hadn't run more than two miles in a while, but I was confident I'd be fine. About halfway into the second mile, I started experiencing pain/pressure in my stomach. I chalked it up to needing to go to the bathroom and pushed through. I finished with a terrible time and tried to go to the bathroom with no luck. I drove home, had to take a mid-term on campus, and after another several hours of this horrible pain/pressure, I broke down and went to the ER.

6 hours later I was diagnosed with two cysts on my right ovary, one of which was roughly the size of a chicken egg, and the other about half that size. Best guess was that running caused them to temporarily twist and that caused the pain. I had the cysts removed on April 7th, and from that we learned they were endometriomas, caused by endometriosis.

We won't know the full extent of my diagnosis until I have another laproscopic surgery on June 14. At that point, the specialist will categorize what stage I am at, try to remove the majority of the scarring and endo tissue, heal the lesions caused by the detaching of the endo cells, and remove my fallopian tubes.

In the meantime, I'm uncomfortable. I have some days where I'm totally fine, and others where I can barely think straight. I am literally counting down the days until my next surgery and hoping that this will be the fix I need.

And now for a little fact: 1 in 3 women have endometriosis. And over 40% of them never know. I was diagnosed only because the bouncing of my running caused two organs that had formed together to break apart. It's only in hindsight that I realize I'd been having symptoms for so long and that maybe that could have been avoided. Don't ignore pain because it's embarrassing. 

Advocate for yourself. My regular GYN only had 3 options of treatment for me and only one of them didn't result in me going into menopause at 32 years old. I refused to accept that and found a specialist who is dedicated to treating this surgically and with the hope of stopping any further instances.

The more I've learned about endometriosis the more I realize how very lucky I am. This disease causes infertility, and yet I was able to easily conceive and carry two healthy babies to term. I am on message boards with women world-wide that have been diagnosed and the biggest thing that stands out to me is that I'm the exception and not the rule. Most of these women will never be able to conceive naturally, if at all. Yes, having endometriosis sucks, but I acknowledge that it could suck so so much worse.

The Cry

Yesterday, my sisters and I drove to Washington, DC to march with 500,000 of our fellow nasty women, bad hombres, and people who believe in the power of unity, see the good in diversity, and are just plain fed up with having the rights of the many ignored for the benefit of the few.

This was my very first rally/march/protest experience. I'll admit, I was nervous going into it. I didn't know what to expect. Would it be too crowded? Would there be fights? People shouting insults? Violence?

Getting to our reserved parking space in DC by the Verizon Center in China Town - a mere 3/4 mile from the National Mall - was bananas. Being native to the area, we had opted to drive based on prior experiences with the DC Metro System. While we were right to have done so (lines at the closest station to our houses were three hours long), by all accounts the DC Metro workers handled the crowds with kindness and understanding and were as efficient as they could be, given the circumstances.

We got to our parking space at about 9 AM and went to a nearby Corner Bakery for breakfast. Being so close to the march and with roads already closed to traffic, that poor restaurant had already been put through its paces! Even with the pandemonium of long lines, long wait times, low toilet paper and low available seating, I could tell right away that the general feel of the day was going to be solidarity. 

Women of varying ages and backgrounds exchanged stories of travel and tales of how they got there. I was shocked to learn how many had come from so far away just to march. North Carolina, Texas, Michigan. The lady from North Carolina had gotten on a bus at 3 AM that morning to get there in time. Their drive and dedication impressed me. There were marches in or nearby almost every city in the country, but these women had come here, to the heart of DC. Like me, I think they wanted their cries to be heard by Congress and the White House directly.

When we finished eating, we headed out toward the Mall. 

Immediately we were greeted by thousands of people with signs scrawled with messages of importance. Not all signs covered the same topic. Women's Rights was just one of the many issues this march was about. Black Lives Matter. Pro-Choice. Health Care. LGBT Rights. Planned Parenthood. Diversity = Unity. End Misogyny. Protect the Environment.

The crowd was much too thick to get to the stage where celebrities such as Alicia Keys, Madonna, Ashley Judd, Gloria Steinhem and America Ferrera spoke. After one attempt to move closer, as a group, we opted to roam the Mall. There were so many important messages to see. Like these Buddhist men and women who, after silently walking through masses of people, sat and meditated on the grass of the Mall. 

We saw signs from women describing ways they'd been discriminated against throughout the years. One I remember in particular stated she was fired from her job in the eighties because she'd refused to sleep with her boss. 

Occasionally a loud cry would ring out and, like a wave, would grow closer and closer to us and we'd find ourselves, too, shouting out loud. Presumably, it would begin with what someone on the stage had said. Though none of us could hear from where we stood, the sentiment was felt and expressed. We were here and we would make our voices heard. The sound would echo throughout the city, ringing off the walls of these great, historical buildings seeped with tales of all the protests and marches and rallies that had come before this one. It was awe-inspiring, energizing and comforting.

Much like those mighty cries, an emotion would wash over me in waves, leaving me momentarily breathless and bringing tears to my eyes. It wasn't sadness, it wasn't anger, it wasn't pain. It was relief. 

For the first time since November 9th, 2016, I didn't feel so alone. For the first time since November 9th, 2016, I didn't feel so hopeless. For the first time since November 9th, 2016, I believed that we could do something; that we could fight for the things they were trying to take from us; that our voices would be heard.

Among all the heartfelt, ooey-gooey sappiness, we found humor. Hand-knit uterus hats, a man dancing as a unicorn, hilarious signs, and some genius people who taped "Russian Voting Booth" on several of the porta-potties. This wasn't angry women whining about oppression. It wasn't "down with the man!" or "fight the power!" It was men and women showing one another, telling one another that they weren't alone. That we were awake, we were watching, we were listening, and we were going to be okay. 

Don't booby trap my uterus.

Queef on him.

Eat pussy, don't grab it.

All that twitters is not gold.

We got lunch, being savvy locals(ish), we ate at the cafe of a less popular museum not on the mall. Even in there, Our numbers were strong. I've never been so happy to be in long lines as I was yesterday, and that's a fact. The longer the bathroom lines, the more people were there to make our presence known. 

Walking back out onto the streets, we were again overtaken with awe. The numbers had nearly doubled.

I have never seen this many people in one place in my entire life. I knew then that we were making history. 

Again, I feel I need to emphasize that every single person was happy. The feeling of the crowd was positive. There was no impatience, no urgency, no frustration. We were all pleased to be there; all happy to still live in a country that this was legal. Yes, it was crowded as hell. No, I couldn't move if I wanted to. And it was wonderful!

The march started and we joined up, quickly being swept up in the masses. 

I am one. We are many.

We chanted with the people. "Show me what democracy looks like! This is what democracy looks like!" My favorite being, "We want a leader, not a creepy tweeter!" The wave of that wonderful cheer would move over us, sometimes beginning at the front and moving back, sometimes coming from the back and moving up the front.
When we reached the Washington Monument, we decided to separate from the group - a process that ended up taking well over 30 minutes to move about 20 yards. Again, it was amazing. I would happily extract myself from that same crowd a thousand times over if it meant drawing attention to all the reasons we were there again.
At the base of the monument, I got my first clear look at the full extent of the march.

You can see the White House between two groups of trees here toward the center.

Just look at all the crazy, glorious, strong people!

Even after the march, the streets were teaming with people. I have no idea what time it actually ended, but we headed back to the car around 5 PM. On that walk back, the cry would sound out and we would shout back. I know we were heard.
In the end, we made over 18,000 steps, walked 7 miles, climbed 20 flights of stairs and brought hope back to hundreds of thousands of Americans.
If you're feeling like I was, hopeless and alone, try to imagine the cry. I know if I need it, it will carry me through darker times than we're facing now. We will be heard. We won't be silent any longer.