A Face to this Disease part 1 of my IC story~

                 A  Face to this Disease

My prayer with this blog is that you will realize you’re not alone out there.  There are many others who struggle right along with you. A face brought to the forefront, a person who has endured many sleepless nights and more than my share of tears. To fully know how I got to be where I’m on this journey, the best place to start would be the beginning. I know that many of you like me can remember when you first were diagnosed. But I have to take you back farther than that, for you to truly understand where I’m coming from.

It’s only been a couple of years since I’ve been diagnosed, but my journey started long before that. It began about 10 years ago in a doctor’s office. My gynecologist office, I was going to see her because I was having a lot of pain that would not let up: periods that were unbearable and a lot of UTIs. I share this part because my IC went misdiagnosed for years and I don’t want that night mare happening to anyone else. It’s vitally important to educate yourself and get second and third opinions. I was newly married and we looked to the future with anticipation and excitement, even in my teen years my periods were heavy and very irregular.

I didn’t know what to expect that first visit. Would it be serious? Life threatening, would I live with it the rest of my life, these and many questions filled my thoughts, as I sat there alone with tears in my eyes. Would it prevent me from my dream of motherhood, the thought of that was more than I could take sitting in that chair, it felt like forever, before she came in, introduced herself and started evaluating my condition. I’m too young for this to be happening explained the pain, and the other symptoms; she then did a pelvic exam, which was not a pleasant thing.

After about 3 visits and reviewing my medical history, she concluded that I had endometriosis which is a chronic painful disease where tissue grows and attaches itself to different organs and she then told me the news I dreaded it can prevent me from becoming pregnant again, I say again because few years prior I had a tubal miscarriage was like come again, I couldn’t believe what I was hearing. I was numb to these words. All I could do as she left the room was cry and the tears were relentless and would not stop.

My gynecologist was a kind hearted woman, all her patients loved her. I could tell she adored her job. She always had a smile on her face when I went into her office. She first tried to control my periods. She noted that I also bled profusely. My cramps were unbearable and my fatigue was draining everything from me. She gave me birth control in hopes that would help control some of the symptoms, but with very little relief to none, the pain and the frustration intensified by leaps and bounds. She explained what Endo would mean, how it could attach to other organs, scared the living crap out of me. She said this tissue builds up and sheds, causing swelling and inflammation which in turn cause pain. I didn’t want this; no one does, why me, it seemed so unfair. So she prescribed mea medicine called Lupron to help control the disease. I tried it for a few months with no relief, so she adjusted the dose and it still no change. Both Don and I were beside ourselves, we needed answerers and we needed them now. But slowly I started to have side effects from the meds, hot flashes; I was even more tired than I already was. I was ready to call it quits, but she convinced me to try one more time higher dose so I went along and prayed for the best. Finally I called up her office before my next appointment and said I need to get to the bottom of this and I just feel like a lab rat, try this, and now try that. I was tired and I was tired of this. I told her to refer me to another doctor we weren’t getting anywhere. So she agreed to send me to Brigham and women’s hospital in Boston. When the team of doctors there went through my records they came to the conclusion I’m having trouble conceiving so let’s try her on fertility treatments. Well we couldn’t afford this treatment and my insurance wasn’t going to cover it, so we left even more confused than before.”What now Lord?”

My gyno said she could try to keep treating me, but I said no I said with all respect this pain has robbed me of enough, I’m not waiting around to see the what if….as I left her office I wiped the tears away, though by now I was used to crying, I thank God I had Don my husband by my side looked at him and said what now? He grabbed my hand and gave it a tight squeeze and said not much, but I love you, I could tell he was scared too. Over the next few years I went to a few more doctors with no more answers than when we left, and the sad thing is no one really questioned the diagnosis I got. So we were under the impression this would be my life, yes I had what I thought was a diagnosis, but the symptoms weren’t being treated at all.