Sunday, July 14, 2013

My Story: Endometriosis, Part I

I've only known one stretch in time when I was pain free. The 10 months I was pregnant was the most relaxing, enjoyable period in my life, aside from the normal discomfort that comes w/ carrying a baby. I have distinct memories of obtaining amazing abs in college because the only thing that alleviated my pain was rocking back and forth or, when I wearied, sit-ups or crunches. 

It started at around 16 years. At this time, what I experienced was what one may generally think painful cycles would include: severe bloating, cramping during the cycle, irritability, etc. I had a doctor who tended to believe I was merely an "hysterical" (ba dum tsss) teenager who blew her symptoms out of proportion.

My mother had a full hysterectomy when I was a senior in high school, and call me crazy, but I had a bad feeling regarding what that portended for my own health. 

I had my first laparoscopy, under the patronizing doctor, my sophomore year of college. I was officially diagnosed with Endometriosis. Essentially, the uterine lining that is supposed to slough off and exit the body was growing outside my reproductive system. When the hormones signaling the end of the cycle begin, the cells have nowhere to go and pool, causing immense pain, bloating, digestive issues, nausea, etc. If it is severe enough, they can form a binding of the organs, limiting movement, increasing the pain, and limiting fertility. 
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At the time of my laparoscopy, I was a residential assistant and had to wheel myself through the halls on a desk chair because the pain as well as the pain pills were pretty interesting for someone who never touched anything other than chocolate. This first surgery was diagnostic as opposed to a form of treatment. Once inside, the doctor did try to zap a few cell clusters with a CO2 laser, but he knew he wasn't able to find everything. Over the next few years, I went through 3 different brands of birth control pills trying to control, well, everything.

I had my second laparoscopy after I graduated from college but before I started graduate school. At this point, I was put on what was, at the time, an experimental drug, that caused me to become menopausal for almost a year. Let me tell you - I am dreading the time I have to experience that in real life. It was miserable. And to top it off, we went through a heat wave that summer that made me feel as though I were cooking inside and out.

By this time, Steve and I were both asking the doctors if they would perform an hysterectomy just so I could have some quality of life. The list of symptoms I experience(d) grew exponentially, and varied as much as and as often as the weather changes. As soon as something weird crops up, I first have to attribute it to my fluctuating hormone levels before I can look to anything else. Doctors refused, stating we were too young to know that was what we truly wanted. I dare any of them to feel what I felt and not think that would be desired.

After the Lupron, I went through another doctor and 2 brands of birth control pills before finally trying depo provera. I started the depo after graduating with my Master's. Depo offered me some relief, finally, but my body quickly adapted to it and it began to be a surface relief and a crutch. I was so terrified of what I would experience if I stopped it, that I kept using it. I was also told that we would be lucky to have children at all, as it seemed most of my system was compromised.

Depo is only supposed to be used for up to 3 years. I used it for 5. It sucks the calcium from your bones, so I stopped the depo and had a bone density scan to ensure the safety of my skeletal health. Because of the lovely side effect of most (all?) birth control, I fought long and hard against weight gain, losing grandly. However, the weight-bearing exercises I had been using kept my bones strong enough to fight off the use of the depo.

This is where my story begins to veer, and thus, the end to part I.


  1. Geesh Dionne,
    I'm so sorry you are going through this. Have you definitely decided for the hysterectomy? Let me know if you need help.

    1. Thank you, Christie - No, we're not definite. I am first trying, desperately, a diet and exercise regimen that is geared towards those with endometriosis. But as of right now, I feel I'm losing the battle. Even Steve can take one look at me and just point me towards the heating pad. And I really really really don't want Syd to grow up with these memories, as opposed to happy ones of us playing and coloring, etc. If we do, though, I'm guessing it will be before this year is over.