Ending the silence. Waging the war on Endometriosis.

Endo Warrior: Melissa Randazzo

Endo Warrior: Melissa Randazzo

Age: 30, Location: New York City, Diagnosis: Stage IV Endo

 

If you’re lucky enough, you somehow figure out what exactly it is you were put on this Earth to do. I realized from a young age that I was put on this Earth to be a mother. When I met my husband, I knew he was the one. I knew that he was going to love me with his whole heart, and I knew that he was going to be the most amazing father. So it’s not surprising that immediately after our wedding we began trying to have a baby. It’s important to tell you that a few months before the wedding, I started to get very intense pains around the time of my menstrual cycle. My stomach could not hold food down during this time of the month. And even after my cycle ended, I was still bloated, in pain and sick to my stomach. This happened every single month. There were times during these months where I had to call out of work. I would roll

into a ball and just lay on the floor, crying in pain. Nothing took the pain away. I would put the heating pad on so high that my skin would burn. But I didn’t care. I would’ve done anything to take the pain away. I went to my doctor on several occasions and was told that I was fine, there was nothing wrong with me. Month after month, the pain started to increase, and it got to the point where I was nauseated from the pain; I could barely stand up, let alone get out of bed to go to work. Again, I went to my doctor and begged him to look into this further, explaining to him that I knew my body and that something was not right. He asked me if I wanted pain killers, which I turned down, and I was sent home. This went on for about a year. My cycle would come, I would cry with pain, I would make an emergency appointment with my doctor and I would be sent home and told to take pain killers. During this time, as I stated earlier, my husband and I were trying to conceive a child. Every month when this did not happen, I would cry from disappointment. Over a year went by and not only was I not pregnant, but I was suffering for 15 or more days out of every month. My anxiety was also skyrocketing. I thought my anxiety was caused from the fact that I wasn’t getting pregnant, but I would later find it was a symptom of a chronic illness which I was yet to be diagnosed with. One day in February, the night before what was supposed to be the worst snow storm of the year, my pain was not lessening, but was in fact getting worse. It was 7:00 at night and my husband urged me to go to urgent care, have another doctor check me out just for some peace of mind before we were snowed in for the next few days. Even though it was excruciating to stand up and walk to the car, I did so. Upon arriving at urgent care, I was was seen by three doctors who were trying to figure out what was wrong. At one point, I was asked to lay down, while a doctor pushed on my stomach and then let go very quickly. A sharp pain ran through my body. I can still feel that pain running through my veins; it was the worst pain I have ever felt. I immediately screamed and started crying. The doctor ran his hands through my hair and apologized and told me that it was all going to be okay. He said that he knew that there was fluid building up in abdomen, but he did not know where it was coming from. He told my husband that I had to be rushed to the emergency room right away, as his best guess without any further testing was that my appendix had burst. The doctor called ahead to the emergency room and upon arriving I was seen right away. I had x-rays, CAT Scans and sonograms done. In between all of this, I became extremely ill. I was running to the bathroom to get sick every 5 minutes or so. It was a horrible night that I will never forget. In the midst of this, the snow was falling so quickly that you couldn’t even see a foot in front of you. The hospital staff were either going home or calling in saying that the they couldn’t get to work because of the storm. The staff was extremely limited. I finally saw a doctor after being prodded for several hours, sick to my stomach and not being able to hold anything down. I was told that they found that both of my Fallopian tubes were filled up with fluid, which they suspected was a combination of blood and puss, most likely an infection caused by something called Endometriosis or Pelvic Inflammatory Disease. But this could not be confirmed without surgery, and there was not enough staff to perform the surgery at this time because it was not deemed life threatening. I was admitted to the hospital for 3 days, placed on several antibiotics and sent home, with the recommendation that I follow up with a specialist right away. I was released on a Monday morning, and immediately was able to get seen by a fertility specialist. All of my test results were sent to him and, with as much compassion as could be given, my husband and I were told the news that he was almost 100% sure that both of my Fallopian tubes had to be removed and I would never be able to conceive a child the natural way. He said he needed to get in right away to clean everything out before it got worse. The surgery was scheduled for March 9th. I was devastated. How could I not be able to conceive a child naturally? I was 29 years old! I’m healthy. I’m a newlywed. I don’t understand any of this. I was told that my only option was IVF, In Vitro Fertilization. I had no idea what IVF was. I never thought this would be something I would have to do. But if it was my only option, then I would do it, because all I wanted was a baby to complete my perfect little family. I asked the doctor when we could start and he said that as soon as I was feeling better after the surgery, we could start. So the surgery came and went. Both of my Fallopian tubes were ruined, scared up and completely blocked. I had scar tissue growing on my tubes, my uterus, my bladder and my intestines. The doctor diagnosed me with “Severe Stage IV

Endometriosis,” which is the worst form of Endometriosis you could have. The silent killer, he called it. Endometriosis is a very common disease, but it is a disease which is not at all taken seriously. People, including medical professionals, such as my first doctor that told me I was fine for a year, do not have enough knowledge about it. And because it is something that you cannot see, people automatically think that it cannot be as bad as I’m making it out to be. But it is. It is so bad that i had to lose a key component to my reproductive system at too young of an age. It is so bad that I was nauseated with pain, could barely move every month for over a year, but yet I kept being told that I was fine. Well, I wasn’t fine. And I still am not fine.

About 2 years ago, my husband and I started our IVF journey. I was sticking myself with several needles daily. I was seen by the doctor every other day, sometimes every day, for blood work and sonograms to monitor the growth of my eggs. My eggs were removed and fertilized and after weeks of genetic testing, I was lucky enough to have 9 beautiful, fertilized, chromosomal normal eggs to freeze. After my eggs were retrieved, my body had a very difficult time. My body did not heal as fast as others did because of the endometriosis and the transfer of my fertilized embryos was pushed back a few weeks to give my body more time to heal. When I was feeling better, part II of the IVF process began and I was taking several different hormones to make my body ready for embryo implantation. I was a mess. My hormones were all over the place, I would cry one moment and laugh the next. My poor husband. We would be watching a television show and a cute kitten would come on the screen and I would cry for a good 15 minutes while he would just sit there with his “what the hell is going on” face. I would never have gotten through all of this without him. He was and continues to be my rock through all of this. Despite my craziness, he did not even wince once. He stood by my side and would wipe my tears when I cried after seeing a woman on the street with a newborn baby. And so after a few weeks of being on the hormones, my body was finally ready to transfer that little embryo back into me. The day of the transfer I was so excited. You had to come in with a full bladder and I didn’t even care that I felt like I was going to pee my pants, because today was the day when I would finally get pregnant. After everything we have been through, today is the day. It is here and I am so happy. The doctor gave us a picture of the embryo they were transferring and my husband and I looked at the picture like it was already a little baby. It was perfect and it was coming back home where it belongs. I would go back to the doctor 10 days later for a blood test to find out if I was pregnant or not. For those 10 days my husband treated me as if I was pregnant. I wasn’t allowed to carry the laundry down or carry in grocery bags. Every little twinge I felt in my body I knew it was happening, the miracle of life! Every cramp, every emotional breakdown, every little bit of pain I felt, it was okay because I knew it was just my body making moves. 

The day of my blood test finally comes. I’m patiently waiting for the phone call. My phone rings, of course, they decide to call during the 2 hours my husband is out tutoring. But it’s okay, because then I’ll get to surprise him in some cute little way when he comes home and tell him he’s going to be a daddy. As soon as I picked up the phone, I knew. I could hear it in her voice. “Hi Melissa, this is Sue calling from Dr. Traub’s office.” Her voice was somber and low. “I’m so, so sorry to have to tell you this but this round did not work and unfortunately the test came back negative, you are not pregnant.” I could not even speak. I was in shock. I started immediately hysterical crying and words could not come out of my mouth. I told her thank you and hung up. I cried, and cried and cried some more. I screamed and balled and hyper ventilated. I couldn’t reach my husband because he was working, so I called my sister in law, who, despite me telling her not to, came over to my house immediately. And I am so glad she came. I opened the door and threw my arms around her and just cried in her arms for at least 5 minutes, but it felt like an eternity. We talked and I cried and this went on for about an hour. My husband came home from work with a big smile on his face, awaiting the good news. He looked at me, and knew. He came over to me and hugged me and told that it was going to be okay. “That baby probably would’ve grown up to be Hitler” he said, “the next one we put in will be like Abraham Lincoln. That baby was going to be evil, the next one will be it, it’ll be perfect.” And so that night I did everything a pregnant woman is not supposed to do. I ate sushi, drank tons of coffee and chugged wine. I cried some more, and then my husband’s optimism started growing on me and I knew that it was going to be alright. Fast forward to now. I am lucky enough to have gotten pregnant with the next round of IVF. I gave birth to a beautiful, healthy, baby boy, born prematurely at 30 weeks (but I’ll save that for another story).

Please, ladies, gentleman, if you have pain, do not ignore it. Pain is not normal, and it is not alright. I hope my story shed some light on the chronic illness that is Endometriosis. I hope the next time your wife, sister, girlfriend, whoever tells you they are in pain, that you believe them. We need to spread awareness. If my doctor was more educated on the subject, or if he believed me, maybe I would not have lost my tubes and I would have been able to conceive naturally without all of these harsh hormones and chemicals being injected into me. But it happened and these are the cards that I am dealt with. I am one of the lucky ones who was diagnosed before it ruined by entire reproductive system. If this were a more widely known subject, infertility may not be as high as it is now. I urge you, trust your instincts. Trust your bodies. Push for the support you need and deserve.