A Message to my Endo Sisters

In light of a very misogynistic article claiming that women with endometriosis can heal themselves of their disease by reconnecting with their womb, I feel the need to send out a message to my Endo Sisters. Rather than drive up traffic to the offending article, I'd rather speak directly to others who have been demeaned and demoralized. I have had this letter in some form for a while, but now feels like the right time to get it out there and let them know that they are strong, creative, determined, inspiring women no matter what anyone tries to tell them. 

Ignore those who do not understand, and fight for what you know to be true. 

*** 

Dear Endo Sisters,

Your disease does not define you.

Your disability does not define you.

Your body does not define you.

YOU define you.

Of course, your body is a big part of your life. It is the vessel that carries you throughout your time on this earth. It is what you leave behind when you die. Your experiences on earth are shaped by how your body exists. Your genetic makeup, what you eat, how you make your living, where you live. Many of the choices that you make, opportunities that are available to you, and obstacles that you must overcome are affected by your body.

But that still does not define who you are, or what you are capable of.

This is not something that I have always known. This is not a truth that I was taught, or something that I heard that I thought was valuable. This conclusion became clear to me after 10 years battling physical obstacles, and thinking about experiences that are familiar to millions of other women. This one truth, that who you are in your soul defines you above all else, came to me after some of my darkest days living with Stage IV Endometriosis.

In July 2012, I was surgically diagnosed with then-Stage III endometriosis after a large endometrioma required laparoscopic surgery. I had been tentatively diagnosed for years, enduring severe physical side effects from suppressive therapies, meant to stop my body’s natural cycles and prevent periods. I listened to my doctors, never questioning that the treatments were right for me. After my surgery, I was put on another round of Lupron treatment, a drug that was developed for prostate cancer, but is widely used to suppress ovulatory function in women with endometriosis. When it was found that this drug caused bone loss in my spine, my doctors told me that I had no other options, and that if I wanted to get pregnant, I had to do it now.

Not long after, I was given the fertility drug Clomid to jump-start my ovaries, which were not functioning after years of suppression. This dramatically flared my disease, leaving me in intense, daily pain. I was unable to keep up with the coursework in my graduate program, and barely able to work 20 hours a week. I took medical leave from school, and begged my doctor for another surgery.

If ever there was a time when my body defined who I was, that was it. Every waking moment of my life was consumed with thoughts about my growing disease, my desperation to get pregnant, and my growing hatred for the body I was stuck with. How could I be so sick? How could I be so weak? That was not who I felt I was inside, and I grew to hate what I saw in the mirror: a very, very sick person.

This stupid, pathetic body was getting in my way, making me irritable, unfocused, incapable of following through with my commitments. I could barely get myself dressed and accomplish a few chores without needing to rest for several days. The worst part of this was that I started identifying who I was on the inside with what was happening to my body.

My doctors’ aggressive approach to fertility made me even angrier, and I began questioning their recommendations to push forth with In-Vitro Fertilization, rather than having another exploratory surgery. How was I going to be a mother when I didn’t even have the energy to take care of myself? And how would my body handle the daily fertility drugs when it reacted so badly to smallest dose before?

I had read about excision from another endometriosis patient years ago, and decided to look into it. Excision surgery is a method of cutting the disease out like a cancer, rather than suppressing it or burning just the surface of the disease, while leaving the rest behind to grow again, as mine did. I did nothing else for almost a month, learning everything I could about excision, and joining online communities for women with Endometriosis. Finally, I found a surgeon who said he could help me, who seemed to truly care not only about my body and what was happening to it, but what I wanted to accomplish as a person. I booked my out-of-state excision surgery for June 2013.

Dr. Yeung found the cause for all my pain and infertility: advanced Stage IV Endometriosis, binding my pelvic cavity into a jumbled, inflamed mass. Every organ was covered in adhesions and endometriosis lesions. He removed 20 abnormal tissue samples, 18 of which pathology confirmed as endometriosis. My appendix was folded in on itself and had to be removed. My reproductive organs were out of place. My ovaries, which each contained an endometrioma, were adhered to the back of my pelvis, behind my uterus, and one fallopian tube kinked shut. My bladder was beginning to fold in on itself, and my rectum was glued to my vagina with dense adhesions that was causing my intense pain with sitting, going to the bathroom, and enduring exams. My bowel had several lesions that may require a future bowel resection, and my ureters had significant scar tissue, or retro-peritoneal fibrosis.

Had I not advocated for myself, had I followed my gynecologist's advice and not had excision surgery, I would have been at risk for life threatening bowel obstructions and kidney failure.

After I awoke from surgery, my husband gave me a packet of pictures taken by my surgeon, and a recording explaining each photograph, and my diagnosis. Tears streamed down my face for all that my body had been through. Tears of sadness and relief.

My body was not weak.

I was not exaggerating my pain.

My body was sick. Very, very sick.

In the months since my surgery, my body has amazed me. It has shown the strength, endurance, and power I felt inside, but could never seem to show the world. Each day that I do something I couldn’t have done six months ago, or even 10 years ago, I marvel at it.

My body is not weak.

I am not weak.

I am a strong person, filled with determination, passion, and commitment.

I am a person with a terrible disease. But it does not define who I am.

Now that I know this universal truth, that your body, disease, disability does not define you, I am so much happier and grateful for my life. I know that I live with this disease, that it affects what happens to my body and how my body functions, but I will never again believe for one second that it reflects who I am inside.

And neither should you.

You are not your body. You are not your disease. You are not a collection of symptoms.

Many people may judge you by your body, by its shortcomings, or try to say that you are defined by your symptoms. Some preposterous people may even try to tell you that you caused your disease, that you have this disease because of some kind of emotional imbalance, that you can cure it by loving yourself more, or getting in touch with your uterus.

I’m here to tell you not to listen.

You are not a whiner. Your body is sick.

You are not lazy. Your body is tired.

You are not a burden. Your body needs help.

You are not doomed to a life of suffering. You need a better treatment. You need a true endometriosis specialist, one that can effectively perform excision surgery and recommend complimentary services, like physical therapy and nutrition.   

You are a person who deserves respect, admiration, a chance to be everything it is you want to be. You are a person who has fought your entire life to show the world who you really are, despite obstacles that are set in your path. A person who deserves the proven treatment, a chance at a full life. Endometriosis does NOT resolve on its own, nor can it be cured with hormonal suppression, GnRH agonists and antagonists like Lupron and Elagolix, or by wishing it away or reconnecting with your uterus (if you still have one). You deserve better than companies and individuals who would prey upon your suffering for their own profit. You deserve medical professionals who are trained and educated about your disease, who will listen to your symptoms and can identify the real problem, or find someone else who can. 

You, the strong, the incredible, the determined, the loved, and the devoted.

Now is the time to show the world what you are capable of, and fight for the chance to achieve it!

Keep fighting! Let’s get our voices heard!

For more information about endometriosis, excision surgery, nutrition, and the Million Woman March, please visit the following links:

Endometriosis Research Center

Center for Endometriosis Care
SLU Center for Endomeriosis

Endometriosis Morbidity: can it be prevented with early diagnosis and complete excision surgery

endometriosis.org

The Nutritionista

Ask Me About My Endo