I normally try to leave a lot of my personal life out of my blog, however, I felt compelled to share my personal story with you, after Stacey Skrysak from WAND News so graciously shared her struggles with fertility with the world. Her blog moves me to tears every time I read it, and I think its also helped some of my family members who are right along with my husband and I in this journey, as well as myself, get a little comfort in knowing the way we feel is normal and there is hope!
I'm 30 years old, and my husband and I have been trying for three years now to get pregnant. I had always suspected, but found out indefinitely when I was twenty five that I have endometriosis. I have had violent cycles since I was very young, causing me to miss school and work, and they had been growing continually worse, so I knew that was not normal. At that time, we had just freshly been married, and weren't thinking about children yet, wanting some time together for just the two of us. We weren't even certain we wanted children. Two years later, my grandmother, who was very young & like a second mother to me, passed of ovarian cancer. We realized at that time, that not having children meant not building that support system and circle of love that he and I had always been surrounded with. We wanted to continue to grow our family and we want to share in the love of being parents together. We didn't even realize how deeply we wanted this until it really became a focus.
We tried everything, BBT, fertility herbs, no alcohol, we both really focused on a healthy diet, month after month, only to end in excruciating disappointment. And to top it off, the disappointment was accompanied by unbearable pain, and vomiting for 4 days. I am the eternal optimist. Each month I would tell myself, its not the right time. And I still believe that to this day. But what really got me down, was the fact that I secretly felt jealous, and being frustrated with myself because I don't normally feel that way! That killed me because I was disappointed in myself for feeling like that, even for an instant, when I KNOW so fully in my heart that babies are always a miracle and a blessing, and that even in seemingly unsuitable situations, those babies are heavenly gifts brought here for a purpose. My heart was genuinely so happy for my friends and family who were pregnant! It almost seemed like I was being tested, because at one point, it seemed like everyone was pregnant from less desirable situations, and I swear some of my friends just think about getting pregnant, and the next day it happens. I am by no means judging them, I was just having a bit of a pity party at that time, but I would quickly get over that and I know now, it was not the right time for us.
About a year and a half ago, while on this baby-making journey, I started having more severe health issues. Not only was my cramping at its all-time worst ( I literally felt like I would die sometimes, writhing on the floor in agony; my poor husband felt so helpless.) But I started having major stomach issues, everyday. They were so bad and inconvenient that I developed anxiety about going anywhere. I didn't know if it was really happening or in my head because it was happening so frequently. One night I had a horrible attack that was unlike any pain I have ever experienced, and I am very familiar and used to dealing with pain. We went to the emergency room and they did nothing at all. It was shift change and the nurse forgot to put an IV in me and thought I took it out myself. This was the start of a long line of doctors who didn't believe me.
I went from my family doctor who told me it was probably sinus drainage; to my gynecologist who when I asked her said there was no way it would be my endometriosis causing this pain and suggested I see a GI; to a GI specialist in Springfield, who stood with his hand on the door while talking to me and wrote in my chart that I was "obsessed with the fact that it could be my gallbladder, despite him reassuring me that there was nothing wrong with me;" to a GI in Bloomington who couldn't find anything, said I need to see my gynecologist, and then when I was still having severe attacks, suggested I see a surgeon to have my gallbladder removed, just to see if that helped. This went on for over a year, and at that point I was willing to try anything to have some relief! In the meantime, I had started seeing a chiropractor who suggested I try a gluten free diet, which did seem to ease some of my symptoms. So I decided after the gallbladder surgery, I was ready to see a fertility specialist.
This is where Dr. Loret De Mola and I met. Its quite a long process of getting ready to start fertility treatments and each appointment is spread out because of how busy they are, but my goodness, it is worth it! We had been going through all of the testing, first we thought, despite my endometriosis, that maybe it was also my husband, but they did a recheck and it was border lined. There was talk of us possibly doing Chlomid and IUI, so we went for our appointment to set that up, and to our surprise, Dr. Loret De Mola suggested doing another laparoscopy, even though I'd had one done four years before. He had been looking through my chart and everything that I had been through over those past few years, and he decided given my history, he wanted to look around for himself. Thank God he did. I was disappointed when we left, I remember calling my mom crying, saying, "I have to have another surgery." But she said, "just be glad he is so thorough! This will save you a lot of heartache and money if he can get to the bottom of this." Deep in my heart I knew she was right, and I fully trusted his decision.
I remember waking up from the laparoscopy not feeling right. I said to the nurse, "I'm not sure what I'm feeling, I may need to go to the restroom, or something, I don't feel right." She said, " Oh, you just need more pain medicine." I knew how I should feel waking up, because I had done this twice before, and I felt worse than after my gallbladder surgery! Turns out, what was supposed to be a 30 minute procedure turned out to be 3 hours! I was suspecting that he would remove a blocked fallopian tube, but I did not expect everything else he did. My husband and parents were anxious to share with me everything that he found: he removed my left tube, the right tube had detached itself so he reattached it, there were ten polyps and four fibroid tumors inside my uterus so they had to do a DNC, and there was endometriosis wrapped around my bowels and appendix, one area looked like it had gone through my bowel and caused a bowel obstruction, and my appendix looked like it was twisted into two balls instead of a skinny finger, so I had to have that removed as well.
Thinking I was pretty much good to go and that they took care of everything, Dr. Loret De Mola suggested we do IVF and that at our follow up appointment we would set that up. You can imagine our dismay when arriving for our appointment he said, "the story is not over." Those words sunk heavy on my heart. I just knew he was going to say I had cancer. He went on to say that after sending everything to the lab after my surgery, it appeared that the appendix had this dangerous type of fluid that could "act as a cancer." He was 90% sure it hadn't left the appendix, but had to be sure, and wanted me to see a colorectal surgeon. He said she also may want to look at the area where I had an obstruction for the endometriosis.
So disappointed, yet utterly grateful for the persistence and preciseness of Dr. Loret De Mola, we met with the surgeon. They had sent my pathology to two other GI pathology specialists, and they confirmed that I had what was an extremely rare type of appendix cancer, which is called a mucocele cystadynoma, which is more of a mucousy type of tumor, rather than what most appendix tumors are which is a solid mass, confined to the appendix. She suggested a major surgery involving removing almost half of my large intestine, to be sure they removed any lymph nodes that may have been affected. She suggested having Dr. Loret De Mola be in on the surgery so he could look around more and point out the blockage from what was suspected endometriosis.
So I am writing you today while I am on my 8 week recovery period and leave from work as a hairstylist. My surgery was done 4 weeks ago today, and I am doing very well! The surgery went fantastic, they removed the half of my large intestine, and 6-7 inches as well from my small intestine which had the blockage and was kinked. ( Why the two colonoscopies, CT Scan, MRI, and gallbladder surgery I had this past year didn't show that is still a mystery to everyone?) Everything was tested, they were worried that the kinked area may have been caused by the mucocele, which would have been very bad, but it was caused by the endometriosis as originally suspected. Dr. Loret De Mola was flabbergasted by how much of my endometriosis that he had removed one month before had grown back. He said once we get the all clear my surgeon, Dr. Rakinic, who I can't say enough good things about, that we should begin IVF, immediately. He wants us to build our family as soon as possible, because I need to have a hysterectomy 3 months following the birth of our last baby. My endometriosis is so aggressive and keeps attacking my bowels, so it is imperative that it be controlled, and the only way to do that is with pregnancy or hysterectomy.
We got the all clear at my follow up with Dr. Rakinic. She said there was no cancer in the tissue or lymph nodes, and the small bowel obstruction was caused by endometriosis. We have an IVF consult appointment at the end of July and we are really looking forward to it. After my surgery, I did some research on this type of cancer. My mom had pointed out to me that this was the type of cancer that Audrey Hepburn died from. Usually they don't come across it until its already spread and most doctors don't even know what the jelly like substance is when they see it. I was blown away because I have always adored Audrey Hepburn, and as I was preparing for my surgery, the color I chose to paint my toenails was a Tiffany blue color called, "For Audrey." Apparently her appendix looked really weird like it had probably burst at some point, which we are now suspecting may be what had happened to my great grandmother. They said the same thing about her, but she was diagnosed with stomach cancer. This type of appendix cancer spreads to the stomach lining which is what happened with Audrey.
I can't tell you how blessed and grateful I am. This has been a long struggle, but I know I have angels watching over me, and some here on earth, Dr. Loret De Mola being one of them. Had I not had to endure the pain of the endometriosis, and all of the doctors who didn't help me, I may not have found Dr. Loret De Mola, and I may not have been on this earth for too many more years. He saved my life. I believe I am here for a purpose, and hopefully to be a mother as well. My husband, Jared, said, "If anyone on this planet can help us have a baby, its Dr. Loret De Mola." And I truly believe that. His purpose is to help bring life into this world and to bring joy to people who so desperately want that special place in their heart to be filled. I hope this story helps reinforce the faith that things do happen for a reason, and not to give up if you know something isn’t right with your body. And even though we aren’t pregnant yet, I hope that this story might be of comfort to those who are going through the same emotional roller coaster of trying to have a baby. Sending so much love to you all!!