Tuesday, October 22, 2013

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:


  1. You are amazing! I am so proud of you!

  2. Thank you! Hopefully this will lift the ladies' spirits. Can't believe some girl is making her living claiming she can cure someone by being their life coach.

    1. I read what she wrote. It's not the first time I've heard that theory.

  3. Hi , my name is Judy, I am 44 and have had endo since I was 29. I also have ulcerative colitis. I have had many surgeries also. In fact I had a partial hysterectomy the year I was married and was devastated. I have one son from my first marriage who is my miracle. I had him before the disease at 25. I am so confused because they said a hysterectomy would give me my life back. Here I am in pain. It feels like a tightening in my belly all the time and cramps. I do have a very good specialist, but we lost our med ins. in April. I feel scared for my organs. I have always had problems with that scar tissue which is confusing, I can't tell if that tissue is the disease itself or just a result of all the surgeries. I have done so much research, but the doctors say different things. I am unable to take anything for pain because of my colitis, so I am on my knees every day, literally. I went through two abusive marriages so I know it really took alot out of me on top of this. I am pretty scared right now and have no one to talk to about it. My family doesnt even want to know the details about the disease. It is awful to go through this alone. Thank you for sharing your story so much.

    1. Here is a message from someone on Nancy's Nook who had difficulty replying on the site. I am forwarding this reply to you from her: Hi Judy, my family has problems with colitis and endometriosis. We have recently found out that allergic reactions to foods are a big factor. Several family members are allergic to wheat and dairy. My nephew in his 20's almost died and they wanted to take his colon out. My daughter is suffering from endo and another nephew had severe problems. All have gotten almost immediate relief when they went off of the foods they were allergic to. I suggest you get a food allergy test. No insurance sucks. If you can't do that, try eating only fruits and veggies for a while and see if the pain subsides, if it does, start introducing things you ate before one at a time and see if you have a reaction. What ever is wrong with the body, the problem has to be fed by something in order for it to continue whether that be foods we are allergic to or toxins which attack directly or attack elsewhere and cause a chain reaction down the line and could cause things like hormonal changes. Eat no processed foods. Even whole grains may be your enemy. Just try diet by elimination and see if that helps with some of the pain.

    2. Another ember wanted me to tell you that yes, you need a different doctor, and that the women at Nancy's Nook will always be there for you. Let me know if you have trouble finding the group on Facebook.

    3. Stephanie says "we are all here to support you, and understand what you're going through."

  4. Hi Judy. I am so sorry that you are going through this. Have you seen an excision specialist. It makes a huge difference whether they burn the disease or cut it out completely. Your bowel symptoms may be a sign of endometriosis on the bowel. Endometriosis is not cured by hysterectomy, and there are a lot of misinformed doctors out there. I urge you to visit Nancy's Nook Discussion and Education on Facebook, which is an incredible resource. The Endometriosis Research Center and Center for endometriosis linked in the blog are also great resources for finding a quality surgeon and information about endometriosis. Sending you my best! Please let me know if you have any other questions.


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