How My Experience With Endometriosis Makes Me Stronger

 
 endometriosis
 

There’s a lot more talk about endometriosis than there used to be, but for some reason when I started to write this, I felt stuck. It felt too intimate in a way to reveal my own struggles with this condition. However, endometriosis affects an estimated 200 million women worldwide including Lena Dunham, Padma Lakshmi, Halsey, Tia Mowry-Hardrict. Every endometriosis story is worth knowing, so here’s mine.

It may sound strange, but I believe that endometriosis has made me stronger than I would have been if I never had it.

When you have endometriosis it’s not the same as having a bad period every once and a while—it’s having a bad period most of the time, along with swelling, pain, and inflammation in surprising places and in large doses.

My doctor had discovered a large mass in my abdomen that had to be removed. A few hours after the surgery, I was sitting up in my hospital bed sucking on the best ice chips I’d ever had in my life when my doctor came into the room.

“It’s not cancer,” she said without the joy that usually goes with that sentence.

“That’s good, right?” I asked.

“Yes, but you have endometriosis—we removed a chocolate cyst.”

Chocolate? How could anything chocolate be a bad thing, I wondered. My doctor went on to explain that a chocolate cyst was one that had old blood in it and that they had found endometriosis cells outside of my uterus. They had tried to burn off as much as they could but that the endometriosis would come back, probably even stronger, and that there would many treatments and surgeries in my future.

So much for the delicious chocolate analogy.

Endometriosis is caused when cells from the lining of the uterus appear and exist outside the uterine cavity. Think of them as cells who just don’t care what they do but who are still under the influence of female hormones. I like to think of my endometriosis as badasses. They don’t do what they’re supposed to do, and they don’t care about how much trouble they cause. These cells with their nasty attitude may start out as bad girls, but they end up as hardened criminal scar tissue. I can’t but help but feel that they enjoy wreaking havoc in my lady-parts and I admire them for not feeling like they have to be nice.

Since being diagnosed over twenty years ago, my life changed in many ways. I’ve had all the symptoms you hear about; cramps, chronic pelvic pain, painful sex, constipation, fatigue, and urinary urgency. Every day is a gamble because you never know if it will be pain-free, painful, or the disease will give you a completely new symptom such as back pain, diarrhea, and breathing issues—things that you had no idea could be associated with endometriosis

I’ve learned how to adapt to living with chronic pain, to try different treatments even if they weren’t a sure thing and to know when it’s okay to work through the pain and when to slow down and take care of myself.

I can’t say I’m grateful for having endometriosis, but I am thankful that as bad as it has been for me, it could have been a lot worse which is something I’ve heard other women say. I think there’s something about having endometriosis that gives you empathy for other women who suffer from it.  

If I bend over in the car or at my desk in a certain way, I get a very distinct pain that feels like a reverse cramp—it’s as if someone has grabbed a hold of my ovary, squeezed, let go, but still kept their hand taut and hard pushing against the wall of my abdomen. I don’t just get the pain bending over but I know enough to avoid doing that motion. Sometimes I will suddenly get a burst of pain just from lying in bed. Your bed should always be a place that you can recover, not a place of instigating trauma, but I don’t know when something I do will trigger a pain-episode.

Endometriosis pain can come when you least expect it, and not only can it last for a long time, it can have an echo effect, where the pain is mostly gone but you still feel sore and uncomfortable where the pain was centered.

Before I was diagnosed with endometriosis, no one would have described me as a badass or a boss. However, when you have a chronic condition, you learn to develop new strengths and abilities.

I’ve learned how to persevere even when all I wanted to do was to stay in bed. I’ve also learned that it’s crucial to prioritize myself and to listen to my body and practice self-care.  If I need to stay in bed with Ibuprofen and a heating pad then that’s what I have to do. I had to get okay with JOMO (Joy of missing out) because endometriosis pain doesn’t care if you had plans to go out to dinner with friends.

When you have endometriosis, you must be your own advocate because it can be extremely difficult to get people to take your symptoms seriously. You can have horrible pain, but your doctor just thinks it’s just regular period pain. You know that if you have to keep at them to make them take you seriously, that’s what you have to do.

Endometriosis can make you feel depressed and sad because it’s hard to see the positive side of things when you’re dealing with the double-sided pain of both your back and your front. But you don’t want to miss out on any of the fun things and activities of life if you don’t have to, so you try to eat better, exercise, and visualize feeling pain free. You know that having a good attitude can help a lot. The more hopeful you are that they will find a cure, the closer it will get to becoming a reality.

One of the things I do to help me with my endometriosis symptoms is  “I AM” affirmations.  I say out loud that I am healthy. I am loved, and I am a warrior.

I’m not going to lie, endometriosis is a constant battle and there are times when I have felt defeated, but I keep on fighting because as a strong woman, I know that’s what I have to do to feel better and to thrive.

What do you do when faced with a challenge that seems insurmountable? Let’s talk about it.

HealthChristine Schoenwald