Wednesday, 8 November 2017

My story: Laurie Roma


I remember the first time I felt the pain in my lower right abdomen. Sharp and burning, it woke me from a dead sleep. It didn't go away for two days. I was 21. Over the course of the next few months, my entire life spiralled out of control. I suffered from constant and intense pain and became a zombie. The only time I slept was when my body gave in to pain and exhaustion. I withdrew from college and moved back in with my parents, who didn't understand what I was going through. I looked fine. The doctor couldn't find anything wrong with me... My blood work was normal and I was young. What did I know about pain? The doctor dismissed me as a young girl who couldn't handle cramps and sent me on my way. Several emergency room visits over the next few months eventually led to an ultrasound appointment, which showed large cysts on both of my ovaries. I was placed on birth control pills to regulate my hormones and a follow up ultrasound was scheduled. This became my routine: I'd go to work at my new coffee shop job at 5 a.m. (perfect for the insomniac in me), work until 2 p.m. when the shop closed and then go to the hospital two to three times a week for ultrasounds. The tests always showed the same thing - the cysts were growing. After one appointment, I fainted in the hospital lobby. One of the cysts had ruptured and I was going into shock. 

From there, things seemed to move quickly. I was given a new doctor, and he had a resident working with him who actually seemed to care. That was the first time I heard the word "endometriosis". She always called me by my last name (which I thought was great and made the appointments tolerable), and she said, "Roma, I think you are an excellent candidate for exploratory surgery. I think you have endometriosis". The next week, I underwent laparoscopic surgery and was diagnosed with stage 4 endometriosis. They removed as much of the cysts and endometriosis as they could. I was pain free for a week. One week. This time, the endometriosis was pissed off. It came back worse than before and ravaged my body. I couldn't eat (everything made me sick). I lived off of prescription painkillers. I didn't sleep for days on end. To top it off, I was injected with depo Lupron, medically inducing menopause in an effort to "dry up" my endometriosis. Instead, on top of the intense pain and misery I was in, I could now add hot flashes and night sweats to my list of complaints. Oh, and I was trying to go to school full time by this point and work two part-time jobs to pay for all of my treatments and co-pays. Finally, I broke down and told the specialist to take everything if he had to (still my mentality) if it means I don't feel like this anymore. Actually, I was dramatic and told him if he didn't operate, I was going to do it myself. So, on March 6, 2000, at 83 pounds (told you I couldn't eat), when all of my classmates were beginning the first day of spring break of their senior year of college, I was wheeled in for a laparotomy. That's a side to side abdominal incision for those who haven't experienced this. Endometriosis was removed from about every conceivable body part in my abdominal region, plus they had to take my right ovary and fallopian tube. Amazingly, they discovered I had a tumor in my appendix as well, something my diseased ovary had been hiding. I felt so much better after my surgery that I didn't even take the morphine drip in recovery. My quality of life improved that immediately. 

For more than a decade, I was extremely lucky that medicine, diet and exercise kept my endometriosis at bay. About a year and a half ago, that changed. I began running more and trying to get in better physical shape. After my long runs, I was getting extremely sick to my stomach - to the point where I couldn't do anything for the rest of the day. If I ran a race, I had to immediately go home while everyone else stayed for post-race brunch or after parties, because my body shut down. Then, and my apologies because I know this is TMI, but I began experiencing excruciating pain going to the bathroom (you know what I mean) and passing blood (so sorry for that visual). And too much blood to excuse it away. Yet I did. I had had endometriosis excised from my bowels in the past and just knew it was related and wasn't wanting to deal with any further surgeries or testing. Then, I ran a five miler. My time was great. I was thrilled. Per my routine, I went home immediately and waited to get sick. And I did, and I freaked out. The toilet bowl (my apologies again) was blood red. I couldn't deny any longer that I needed to see the doctor. Still, knowing everything I know, I tried to minimize my symptoms at the appointment. Despite my best efforts, my specialist explained that my bowels were fusing to my reproductive system. In a healthy person, bowels relax during exercise, like running. Mine can't, which causes me to get sick after I'm done and my body begins its recovery. And then he prescribed a colonoscopy, to be done right away to eliminate cancer. Cancer? I was terrified, particularly as a dear friend had passed away from cancer not long before this occurred. Being alone, I had to call my parents and ask for help. Someone needed to be with me afterwards, and I needed help with my dog. I like to act like I can handle everything on my own and don't like asking for help, so this also meant I had to tell them all about the symptoms I'd been experiencing and ignoring for about a year. Fortunately, the worst part of the colonoscopy was the prep, and two biopsies came back clear. No cancer. However, blood work done before the procedure showed that I have virtually no stored iron and was extremely anemic. I needed iron infusions and continue to take iron supplements. This immediately took care of symptoms I was again chalking up to endometriosis - migraines, fatigue, etc. A bone density screening also determined that the years of hormonal treatment had been causing some of the injuries I was experiencing, like stress fractures.

Emotionally, I'm never sure how to explain how I feel. I'm 40. I'll likely never have my own children. That sucks to know, but I'm realistic about things. It can be a bit depressing to think that at age 23 (when I still had hope), I assumed I'd be married with kids by this age. My twenties weren't bad, because my friends were finding their way in life, too. My thirties were strange, as I've watched everybody get married and start their own families. Despite that, I'm happy and think I have a pretty good sense of humor about life, including endometriosis. I love my job, have great friends and am a mom... To a really cool dog who thinks I'm pretty awesome. It does get easier, but man, it's really hard, too. When I was diagnosed, people didn't talk about endometriosis. Padma Lakshmi and the EFA were non-existent. There weren't support groups. Now, it's so odd to pick up US Weekly or People and see that Lena Dunham or Julianne Hough are discussing their endometriosis. Celebrities put a public face to what we are going through, but we need to share our stories (if only for our own peace of mind) and raise awareness. I have been able to talk pretty openly about my experience, and recently watched as a friend was diagnosed herself, and being able to answer questions and offer advice made me feel like going through this was worth it in some way. My best advice is to be your own advocate. We know our bodies better than anyone. If you feel off, trust your gut and find a doctor who believes in you. Most of all, hang on there. You're not alone!


Thank you for sharing your story Laurie.

If you would like to contact Laurie, you can follow her on Twitter @laurieroma or on Instagram @larroma.

Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.

S.
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