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What I Didn't Know About Endometriosis Until My Girlfriend Was Diagnosed

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When your significant other has health problems, you may as well have health problems. It’s like one day you’re having brunch talking about what concerts you’ll see together this summer, and the next time you’re in that cafe, you’re talking about what the surgery options are and how much they cost. Can you imagine that? All the sudden that next career move doesn’t seem so important anymore. All the sudden, at 28, you realize your health is a gift, not something to ever be taken for granted.

It’s July in southern California, and it’s hot out. We both took the day off of work — mine was voluntary, hers was not. She’s recently been diagnosed with endometriosis and her symptoms were so bad her doctor demanded she take time off from work. That day, as we lounge on the couch, I learn so much about this mysterious disease. I learn that it’s a women’s parts disease. I learn that it’s a painful disease of inflammation. I learn that the medical community is not in agreement of how best to treat it. And I learn that many women suffer for years and through multiple surgeries at the hands of this disease. Over the next year, I’ll become somewhat of an expert on a disease that is estimated to affect one in 10 women.

So what is endometriosis? In the easiest way for my guy mind to understand it, it’s when cells from women’s parts end up elsewhere in the body. So let’s picture there’s an endometrial cell in a woman’s uterus — let’s call her Anne. When the woman has her period, Anne inflames and causes discomfort (hence pain, cramping, etc… during a women’s period). Now luckily for this particular woman, her body is working correctly, and she sheds Anne from her body in the form of bleeding and discharge and all is fine. However, when a woman has endometriosis, Anne (our endometrial cell) finds her way into very unusual places. She continues to inflame each month, or really whenever she feels like it, but there is no relief because she’s not in the uterus anymore. If she finds a home on the colon, chronic constipation can occur. If she ends up on the diaphragm, difficulty breathing can occur. If she resides on the the abdomen wall, chronic stomach pain can occur. “Picture you always have appendicitis,” is how one woman described it. And if she gets near a pain nerve, that nerve basically sends pain signals to the brain all day everyday, shooting pain up and down the body. If she is on multiple abnormal places of the body, which is often the case, she can get a combination of these symptoms. In short, it’s an awful, terrible, painful, invisible, disease of inflammation.

Fast forward about eight months. We have a second surgery coming up (the first one made it worse), and she has decided to see a local specialist here in Los Angeles before going through with this second surgery. She calls me during my lunch break after talking with the doctor. As I sit in my car, she says, “I can’t believe it. He thinks I shouldn’t go through with the surgery and that I’m making a big mistake. He’s a specialist in this and I don’t know what to think now.” I can feel that she’s beginning to wonder whether she’ll ever get her life back. I assure her that we have done our research, found one of the world’s experts on this disease, and there are many women who have had surgery with him and are much better now.

But slowly, doubt starts to creep in even for me. After all, this man is a doctor, and I’m a mere amateur doing research on the internet. And such is one of the single biggest challenges in understanding this disease. Even though many believe excision surgery is the “gold standard” treatment, I found that many doctors will recommend against this. Even more shocking to me was the rate at which “specialists” tell women to get a hysterectomy to “cure” this, or perhaps worse, tell them “The pain is in your head and there is nothing wrong with you.” After hearing this many times, I can’t help but wonder: Would a doctor dare tell this to a man, if this were a disease that affects primarily men?

After some time, we shrug off this doctor and set our sights on the second surgery. It’s about four months away now and we are counting down the days, literally via a calendar on the fridge. During this time, I see the full gambit of effects endometriosis has on a women’s body, mind and spirit. I think back to the the countless doctors we have seen just leading up to this waiting period. We’ve seen gynecologists who put her on a dangerous hormone drug, we’ve seen lung and heart doctors for her breathing issues, which involved one visit where we she had to have a wire put into her arm and up into her heart, while she was awake and riding a bike (and they say women are the weaker sex)! And we’ve had several emergency room visits where her blood was tested for every possible condition while she lay crying and holding her stomach as all the results come back negative. It’s almost a blessing just for her to be formally diagnosed with endometriosis. For those four months it’s the same day on repeat. “How are you feeling today?” “I’m OK, just the normal pain. I can’t really eat today.” “I lost another pound this week.” “I don’t want to see anybody tonight, I’m in so much pain.” “Thirty-five more days until the surgery in Atlanta.” “I’m scared this surgery will not work and I’m making the wrong decision.”

It’s May of 2016 and we have arrived at the Center for Endometriosis Care in Atlanta for the big surgery. We must go through all of pre­-surgery meetings the day before where the different scenarios are laid out. Some are very scary with lifelong repercussions one must live with — after all, you only get one body. But our stress is put to ease by some of the nicest, most caring doctors and nurses we’ve ever encountered. It’s the day of the surgery now, and she’s been medicated and prepped for surgery. Her mother and I sit in the waiting room for several hours waiting to hear what they found. Finally, a call comes from inside the operating room. The nurse says they did find endometrial cells and they were on many places, with the diaphragm having the most of any area. She does in fact have endometriosis and we can likely say that this was the cause of her breathing problems (among other things)! We’ll spend several days in the hospital after the surgery, and another week in Atlanta afterwards for postoperative meetings with the doctors. I’ll see her go from the marathon-running 29-year-old she was, to the 30-year-old endometriosis survivor she is, walking with a walker she’s far too young to have in her hands.

For now, the road to recovery has begun, and it will likely be a long one. No doubt, many women (and their partners) have had experiences just like ours, and many more will. If there is one piece of advice I could give, it would be to arm yourself with information. The largest challenges with this disease seem to be getting a proper diagnosis, finding a doctor who truly understands it, and in some cases, seeing a surgeon experienced in excision surgery.

Shout out to all the women fighting this invisible disease. I feel for you.

Image via contributor

Originally published: June 16, 2016
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