Endometriosis and the Infertile Label | spelhouseLove

Endometriosis and the Infertile Label

This week I found the blog, Unashamed Growth by Alaina. She is the wife of a college friend, and her writing chronicles her journey through infertility toward motherhood. I spent a nice chunk of today reading her posts and learning more about her challenges, and I discovered that she and I share a reproductive disorder. It may be shocking that with all these kids I have, I experienced fertility challenges, but in 2003 I was diagnosed with Endometriosis or endo for short. It is a painful disorder that impairs fertility in up to half of its recipients.

The road to my diagnosis was a several year journey. I started having symptoms in high school, including long, severely painful periods that sometimes kept me home from school. Even though I was extremely healthy, I had a major risk factor: an immediate relative with the disorder. My mother suffered from severe endometriosis before I was born. In fact, she and my dad tried for several years to conceive, and after two surgeries, they were finally able to have me.

When my symptoms began it was back in the ’90s, before Vioxx was recalled, so I was prescribed the extra strength pain relievers and snacked on them for one week out of each month. To reduce the symptoms, I was also prescribed birth control pills, which are used to regulate, shorten and lighten cycles and symptoms. It’s effectively hormone treatment, but ultimately this is just a patch. I continued having crippling cycles until I entered college, and by then my mom was pressuring me to have the same surgery she had. The crazy thing about endo is that the only way to confirm it is to see it. Literally. When a doctor suspects this disorder, of course you have an exam and an ultrasound, but the funny thing is that since you can’t see endo during an ultrasound, a doctor must physically confirm its presence. The surgery to confirm endo is called a laparoscopy, and this “minimally invasive” exploratory surgery is unfortunately required to confirm the presence of the disorder. If doctors see endo, they remove it with a laser, and immediately the tissue and symptoms are gone.

In high school and throughout college I had several friends with bad cramps and didn’t think that surgery was necessary, but my mom shared more details about her journey toward motherhood. After she’d had her first laparoscopy, the doctor found no endo in her pelvis. In fact, he recommended that perhaps the pain was in her head and suggested she sit down and chat with another type of doctor if you know what I mean. She was deflated by this. The insinuation that the pain was not real was an unbelievable diagnosis. She knew what she felt each month was real, and she tenaciously sought after and found the best doctor in Minnesota. On a cruise and just by chance, she bumped into one of the best endo specialists. At a dinner table on the cruise, she shared her battle with him, and once back in Minnesota underwent a nine hour surgery where he thoroughly explored until he found the endo. It was in a very nontraditional location and it had traveled throughout her body. Her doctor found it caked on her liver, so much so they initially thought the organ was diseased with endometrial cells which has permeated it. After lasering off the cells, thankfully her liver was healthy. Can you imagine the relief she felt at her post-op discussion after learning he not only believed her, but found and removed the problem? What joy and relief.

My mother’s urging was fueled with the wisdom gained by her struggle, and after prayer and confirmation, I headed to the doctor for my turn at exploratory surgery. The doctor was a little hesitant since I was so young. Typically, it takes years for the symptoms to appear, and her doubtfulness of the severity of my endo’s progression was clear. My surgery was scheduled for spring break of my first year at Georgia Tech (my fourth year in college in a five year dual-degree program). Hubby came home with me to Minnesota, and he had the BEST bedside manner. In fact, I think this is when my mom fell for him. The night of my surgery, Hubby, who was just my boyfriend at time, dragged a mattress into my bedroom and slept on the floor next to my bed, checking on me all night. Keeper, right? I don’t think he realized the entirety of the risks of endo. We dreamed of having five kids back then, and the thought of me being infertile would have made our marriage exponentially tougher.

At my post-op appointment, the doctor showed me pictures of my insides. She’d found and removed moderate endo, much to her surprise. She recommended that I not delay in baby-making, as my body was healthiest now, and my fertility would only decrease with each subsequent cycle. I told her, as soon as I get engaged and then married I would do that! So fast forward to 2005, Hubby and I put baby-making at the top of our list, with no complaints from him. Hehehe.

After three kids and three miscarriages, here I am, ten years after my laparoscopy, and experiencing pain so severe I’ve been missing work to stay home, curled up and full of extra strength Motrin each month. Again. I went to Dr. J, the best OBGYN in the county, and she gave me my options. More hormone treatment or another surgery. The thought of yet another surgery totally repulses me. And the hormone therapy is not any better. In fact, one of the drugs actually sends me into menopause. Ew. I wrestled with the options for a week or so, and came to a happy conclusion. I am not going to do either option. I am going to treat my endo with diet. I believe what we put in our bodies, our minds, and our spirit controls what grows and comes out of us. I have to write this and put it out there, because I will need extreme accountability. The foods I’m talking about eliminating are staples in my life and some are dear to my heart. While I’ve made significant changes to my diet this year, I have not transitioned to a sugar-free vegan diet, which is basically what I’m considering. These foods are tasty, delicious, soulful ingredients and are called inflammatory foods which include trans fat, MSG, sugar, white breads/rice, gluten, certain animal products, especially beef products and alcohol. In essence, this translates to no processed foods, nothing in a packages, and lots of fruits and veggies. It will take several changes in my eating behavior and programming to see this through. I’m thinking of starting in January and doing it for three months. Pray my strength! If you know anyone who’s adopted an anti-inflammatory diet to combat health issues please send me their success stories.

Beyond my treatment plan lingers a penetrating question. Almost weekly, someone asks me/us if we’ll have a fourth child. I respond with answers ranging the full gamut including the smart-Alec “Are you going to carry for me?” to a neutral “We’re good with our three” to just a transparent, “Maybe.” It’s a fluid answer and my current symptoms make me wonder if number four is even a possibility. It’s tougher to think about endo when there’s a chance that three is the finite, unchangeable number for us. Don’t get me wrong, three is a huge number, a number that I’m grateful and blessed to have. But also, a number that until recently still had a question mark behind it. I’m only 33. The age my mom was when I was born. I am done? Is three God’s plan for us? Before, the open possibility of God blessing us again was sheltering so many emotions. Joy, surprise, cautiousness and to be truthful some fear. The possibility was like a cocoon filled with the unknown, which is slowly draining and shriveling instead of bursting with life. That question is one I pondered after my surgery in 2003, but now ten years later I find myself wondering again, am I infertile?

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Hi. I live in North Texas with God, my man, my boys, and a sweet baby girl.
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