Sunday, July 8, 2012

How it all started...Type 1 Diabetes, 35 fibroids, 1 polyp & Asherman's Syndrome


My journey started in college right around my 21st birthday. When I would be in college lectures and could not read the powerpoint presentations. My world was a complete blur. I had always had perfect vision. I have a petite, athletic build and was losing weight (barely 90 pounds at diagnosis) while I was eating and drinking constantly. I could eat an entire pizza, half a pan of brownies and drink a gallon of water and still had an intense thirst and hunger. This was not my normal diet. My roommates could not believe how much I was consuming and told me I was going to go broke buying groceries. My mouth was very dry and I felt dehydrated. I was always looking for the nearest restroom, having to visit every 5 minutes. I was taking health classes and knew these were symptoms of diabetes. I decided to go to student health services to be tested. I was looked at like I was crazy and was told I needed to meet with a nutritionist. I was thought to have an eating disorder.

After going another several days of being lethargic and fatigued, I asked to have labs drawn. I was in complete shock when the labs came back and didn't ever think I would be told that I had a disease that I would have to manage and control for the rest of my life. I was always very healthy, never got sick and had an amazing metabolism and could eat whatever I wanted without worrying about gaining weight. Exercise had always been a part of my daily routine and I consumed healthy food choices. My fasting blood sugar came back at 575mg/dL. I was immediately admitted to the hospital and diagnosed with Type 1 Diabetes and started on insulin. Type 1 Diabetes cannot be prevented. There is nothing a person can do "wrong" to provoke the body to develop Type 1. This type is much more severe and only accounts for 5-10% of all diabetics. It's caused when the insulin producing cells in the pancreas are destroyed by an autoimmune response that is unknown. We are usually not overweight or unhealthy and know how to handle the disease with multiple daily injections and finger sticks. I knew from this day forward that my life would never be the same and it was going to take lots of hard work and making needles my best friend to manage this disease. I knew this was something I could do. I also thought this would be the only medical condition I would have to worry about if I had tight control of my sugars. Starting off on multiple insulin injections per day worked well in the beginning but I always struggled with the metabolism of my long acting insulin over the years with experiencing multiple hypoglycemic events (low blood sugar) during the night. I began to not recognize these events and was not waking up in the morning. I came close many times to being a victim of dead in bed syndrome. My husband had numerous scary mornings sitting by my side trying to wake me up. I then found a new care provider for my diabetes. She made a world of difference in my care and also has Type 1 Diabetes and an insulin pump and can relate to the daily diabetes struggles. In April 2011, I made the decision to manage my diabetes with an insulin pump and thought this would be an end to my scary health conditions. As I approached my 30th birthday last November, I was faced with something even more difficult to deal with.

November 2011
During my annual pap exam I addressed concerns of having very heavy periods (bleeding through a super plus tampon within a minute of insertion), having severe cramps that left me unable to stand at times, frequent urination, bloating, abdominal pain and legs falling asleep frequently. I even had to cancel plans around the time of my cycle due to the heavy blood flow and pain. I ruined many articles of clothing and bed linens over the years. I also shared my want to conceive and that I had been trying with no success. My exam was completed and I was told I should have a vaginal ultrasound and given no explanation. I was worried and wondering what could be going on with me. I knew something had to be wrong. I ended up going to the hospital a few days later, I was bleeding so heavily and it looked like a crime scene had occured in my bathroom and on my bed. I was feeling weak and tired. Two weeks had gone by and I was extremely worried at this point and was not hearing back from my gynecologist. I ended up getting the results from medical records and took them to an independent OB/GYN clinic. The gyn I saw had been practicing for many years and looked at the ultrasound report and said things were not good. He performed a pelvic exam and then handed me a box of tissues. I had no idea what to expect. I was told I had diffuse uterine fibroids and they were taking over my entire uterus and that surgery was not an option and that I would never be able to get pregnant or carry a child. I was alone at this appointment and I felt as if I had been stabbed in the heart. My dreams of pregnancy had been crushed and I left the appointment with a feeling of deep sadness and depression. I don't have any family in the state, so as soon as I got home and shared the news with my husband we went straight to our church in tears to pray. I had an MRI and was given the options of putting me in menopause with Lupron or to have a hysterectomy. I was so upset that I had suffered many years of heavy, painful periods and was always told that was normal for me and I just dealt with the awful pain, thinking that's how my cycle should be.

December 2011
The driven person that I am led me to rely on hope to find someone that could help me through this battle. My research found a Reproductive Endocrinologist(RE) who is an internationally recognized expert on uterine fibroids. Uterine fibroids are benign(non cancerous) tumors in the uterus. My fibroids were diffuse and I mean distributed throughout almost all the free space of my uterus. This caused my uterus to be larger than normal and around the size of a 3-4 month pregnancy. The fibroids were pressing into my bladder and my uterus was starting to impinge on my spinal nerves giving me severe back pain and making my legs fall asleep often. My RE reviewed my symptoms and MRI and decided that due to the position of my uterus, number of fibroids and to preserve fertility, that the most invasive operation could be performed. After having a sonohysterogram (SHG-catheter is placed through the cervix for fluid to pass into cavity and ultrasound makes images) to get a better view of my uterine cavity, it was found that I had a small endometrial polyp as well. I didn't care how invasive the operation would be or the length of recovery. I was just so happy someone could help me. I wanted to give her the biggest hug and jump for joy in her office when I learned this news. It felt like a weight had been lifted from my shoulders.

My main goal of surgery was to relieve my pain and remove the fibroids. The second goal was to heal from the surgery and then begin trying to conceive.  My Christmas wish had been answered and my surgery was performed December 28, 2011. My husband and dad accompanied me to my surgery in Rochester, MN at the Mayo Clinic.  I had an open abdominal myomectomy to have my uterus out and exposed to remove all the fibroids. The total count came to 35 fibroids and a D&C was done to remove the endometrial polyp from my endometrium or uterine cavity. I was told the surgery went very well but felt so sick that it was hard to believe this news and to have hope. I tried my hardest to smile when the surgical team came to my room and explained how things went. I later learned the sick feeling was from my diabetes. It was my first ever operation and I didn't know what to expect. I did have a traumatic experience of becoming alert while still having the intubation tube down my throat. I remember gagging and the very uncomfortable feeling of being intubated and hearing the suction and the feeling of it being pulled out. The memory is still very clear in my mind and brings me fear.

While in my hospital bed the sick feeling reminded me of diabetic ketoacidosis (DKA). DKA is a potentially life threatening complication in diabetics when the body has a shortage of insulin or resistance and instead of burning fatty acids the body produces acidic ketone bodies. I had a very dry mouth, nausea, abdominal pain and confusion. I was so dehydrated that when trying to eat a cracker it just stuck to my cheek and I could barely swallow any water. The prepared diabetic that I am brought my own ketone strips to the hospital. I asked the nurse to check my urine when emptying my catheter. I could see the dark maroon on the strip from the bathroom and started to panic. I had the largest amount of ketones and knew something had to be done to prevent me from diabetic coma. DKA can occur in diabetics following a surgery due to fasting for so long and the insulin resistance from the stress hormones that the body faces when going through a surgery. I knew I needed to take action of this serious condition and tried my hardest to drink plenty of fluids and tried to introduce small amounts of food. I don't think I slept a total of an hour during my stay, worried that I would fall asleep and never wake up. The pain meds left me in a blank stare and I was unable to concentrate or even focus on the television. I thank my wonderful friends and family for the beautiful flowers that flourished my room and gave me something to brighten my room and spirit. I also stared at the picture that Brett hung on my board of my loving furry companion, Little Bentley. My dog is one of the favorite things in my life and can always make me happy. I went home on the third day after my surgery and my mom flew from Seattle to stay for the first 2 weeks. I can't thank her enough for all her help with cooking and cleaning. I think Brett may have enjoyed this more than I did.  It was difficult knowing I had to rest and take it easy. Surgery and healing really takes all your energy. I left the house for the first time on my 5th day home. A half hour trip to Target required a 3 hour nap when I got home.  I was off work for 6 weeks and that time sure flew by. The surgery experience would have been easy if I did not have my diabetes to interfere. During my recovery I learned that my grandmother had taken a fall and had a severe traumatic brain injury. I traveled home to North Dakota to be with her and my relatives. This took the pain away from me as my focus was on my beloved grandma. I had posted this verse along with her picture on my facebook page: God saw you getting tired and a cure was not to be. So He put his arms around you and whispered, "Come to Me." With tearful eyes we watched you and saw you drift away. Although we loved you dearly, we could not make you stay. A golden heart stopped beating, hardworking hands at rest. God broke our hearts to prove to us, He only takes the best. You will be forever missed Grandma.
My favorite companion:
Little Bentley



The fibroids that were removed from my uterus
I still can't believe I had all those growing inside me

 March 2012
It had been 10 weeks since my surgery and I still had not had a period. My cycle was always regular and this led me to believe that I developed a complication from the surgery. I was having burning, stabbing, pulling sensations near my groin area. Scarring or developing adhesions was my biggest fear going into surgery and I made my RE very aware of this and it was the last thing I discussed with her before I was transported into the operating room. I knew my history of developing thick scars on the outside of my body and the family history of my father and grandfather developing keloid scars after their heart surgeries. Another SHG was performed and the arrival of devastating news. My entire uterine cavity was obliterated or completely scarred shut. I was not experiencing a period because the blood was not able to escape. I was told I had intrauterine adhesions and that it should be no big deal and I would have no problems getting pregnant. I would now need another surgery. The sadness and depression came back and I could not believe my biggest fear was haunting me. I felt misinformed and did my research to find out that severe intrauterine adhesions are called Asherman's Syndrome(AS). AS is an acquired uterine condition characterized by the formation of adhesions or scar tissue inside the uterine cavity. The uterine cavity is the place where an egg implants and a baby grows, without a cavity there is no possible way to carry a child. In my case the front and back walls were completely stuck or fused together by very dense, tough adhesions. It was caused by the D&C to remove my polyp or the myomectomy to remove the 35 fibroids if the cavity was entered. We decided to leave our worries behind and take a vacation to Mexico to relax on the beach before surgery #2.
Annual vacation to Mexico
Beautiful Cabo sunset
April 2012
On April 16, 2012 I made another visit to the operating table. I would have to say I was even more nervous going into this surgery. I knew the first chance at successful removal of the adhesions would give me the best chance at opening the cavity and if not could make things even worse. After being given so much hope by my RE and not addressing my concerns of scarring before the first surgery, I was unsure if I was making the right decision. I understood from my own reading how difficult AS is to treat with success and later learned from another RE that out of all medical conditions it is one of the toughest to treat and correct. My RE has the best bedside manner that I could ask for and stood by my side holding my hand and rubbing my shoulder in the pre-op and in the OR. She has been through multiple surgeries herself and understands my feelings. I feel very comfortable with her by my side.

A hysteroscopy was started and it was determined that the scarring was severe and a perforation was made to my uterus and laparoscopy was then performed. I again felt very ill after the surgery and developed a large amount of ketones. This time I had nausea, felt dehydrated and began vomiting multiple times. Throwing up after having abdominal surgery is not comfortable. The nurses took away my water because I was vomiting excessively. I was vomiting because I was in diabetic ketoacidosis (DKA)and needed to be hydrated and knew to drink water to try to flush the ketones from my body. The symptoms of DKA are awful and more than scary. I had a stent placed in my uterus for one week to hold things open during healing and I was on hormone therapy for an extended lengh of time to build my lining. Just two days after my catheter was removed, I started to experience the same stabbing, burning, pulling sensations and this worried me. I knew exactly what was happening, the adhesions were reforming. I waited out the hormone therapy and was off work for another week.

May 2012
It had been 4 weeks since surgery #2 and I had signed up for a 10k race during my recovery in January. I thought I'd be more than ready to run by this point. I was trying to let my body heal correctly and ran a total of 4 times before the race. I had just finished my hormone therapy and could tell I should be getting my period. The day of the race I felt great but made sure not to push myself and was happy with my finish. I wanted to see a flow of blood more than anything and wish I would have had it running down my leg by the time I crossed the finish in the dome. My period did not return and back for another SHG I went. I knew the news that I might encounter and as soon as I walked through the doors of the RE office I began to shed tears. Just sitting in the waiting room brings me a feeling of unease. A RE that was finishing his fellowship was performing my SHG that day. SHG's are never fun but I'm so used to them by this point. I was told to get dressed and that he would discuss the findings with me in a room with my husband. He was very honest and straightforward with us, something we have always wanted. It has been so hard getting bad news when we were always given so much hope for my case. He explained that my AS case was severe and that he wasn't sure if it could ever be corrected. My uterine cavity was scarred shut again. This means that there are no assisted reproductive technologies that could help me, without a uterine cavity I am not able to carry a pregnancy. They had never seen this happen in my particular situation. RE's at the top hospital in the United States have not seen this occur. How could this be happening to me? Could any good come out of this? I didn't know how many more surgeries I could put my body through but knew I wanted to experience a pregnancy more than anything in the world. How safe were future attempts in the operating room? I knew I needed to rely on hope and more than anything besides pregnancy, I needed to focus on my health and relieving me from the pain and avoiding other health issues that can arise, including fibroids coming back, endometriosis and endometrial cancer. I knew another surgery would be my next step.

June 2012
It's a beautiful summer. I should be enjoying the sunshine and warm weather. Summer is my favorite time of year. I love to spend time in our boat, run, bike, garden and camp. I am usually a loving, caring person with a strong faith, instead my life feels so unhappy and at times I doubt God and His plan for me. My journey through infertility has been a long, emotional and financial rollercoaster. It has brought me to the lowest parts in my life, all I can think about is my struggles. I feel isolated, segregated and ignored. Loneliness has been one of my constant companions. It is hard to convey the devastation, frustration and heartache that permeate me each day.  Everywhere I look something reminds me of not being able to carry a child. How bad it hurts to know that there are no assisted reproductive technologies that can be used to help me me carry.  It feels like a deep pain or spasm in my core to see a pregnant woman, a baby or hearing of pregnancy. Pregnancy has become an epidemic. I guess if you don't want kids or have not had them, especially if you don't plan them or get pregnant easily, you don't have any concept of what it's like to wait to become pregnant, while enduring the pain of many tests and surgeries and having an ache to be able to experience childbirth. How can you know what it's like to feel broken? To feel useless to your husband and parents because you cannot fulfill their needs. To have to force the hideous thought that you may never be able to carry a child.

For most people whose lives have not been touched by infertility, they don't understand or even appreciate the absolute pain of being told you're NEVER going to have a baby. Some cry with you, others listen and seem to understand, while some suggest to "move on" and accept the fact you'll NEVER have a baby. I appreciate the friends that have cried with me and can see and feel my hurt and to those of you that check in with me to see how I'm doing and are ready to listen with the latest news and to my best friend who always reminds me to keep my faith alive. The others that don't seem to care, your lives are just too easy and you need to learn compassion for others. I am fully aware that there are other options of adoption and gestational carrier and don't need to be reminded of these. I am thankful to have met women in my infertility support group and from the AS community that are experiencing or have had the same feelings and know exactly what I'm going through. These people know the true pain.

I tell myself I was named after the right woman in the Bible. Sarah was barren. Sarah and Abraham's story reminds me that God is the giver of life and he can bring about miracles. We do not know what God may be doing in our lives, even when it seems like he is not doing anything at all. God can surprise us! "For nothing is impossible with God" (Luke 1:37)

It's hard to tell people I'm failing at something so monumental. Growing up I was an ambitious and motivated student that strived for excellence. But more than that, this isn't just failing a history test. This is failing to create a life, a living being-our baby. The future to my life.

Saturday, July 7, 2012

Perseverance

This site has been created and designed to share my long and emotional journey with friends and family. I feel completely compelled to share this blog with as many people as possible, for others to understand my hurt and pain and the hope that it will encourage other women that they are not alone in this journey and to never give up until you find the treatment choice that is right for you.