endometriosis

Patient Story- Kasi: Endometriosis, Infertility and the Path to Motherhood

As Endometriosis Awareness Month comes to a close, we wanted to share Kasi’s journey. It’s one of strength, resilience and hope. Kasi endured years of pain from endometriosis, multiple surgeries and several IVF cycles. Through every challenge, she never gave up on her dream of becoming a mother. Today she holds that dream in her arms- her beautiful son, Koah.

He has brown russet-colored eyes that are full of depth. They sparkle when he laughs and when he looks at me. He has his father’s hair and my jawline. His latte-colored skin comes straight from me. He is the light of my life and for many dark years, I wondered if he’d ever be here.

Years of Pain Without Answers

I had a plan for my life as many women do.  The plan was to finish graduate school, get married, buy a house, and then start a family.  My early twenties had their own hardships that centered around midterms and quarter-life crises. I also had unusually painful periods that most doctors dismissed with instructions to start taking ibuprofen a couple days before my period would start. But the pain would still leave me curled in a ball in the middle of my bed every few months. A doctor at the health services recommended taking birth control pills to help regulate my periods and reduce the pain.  It worked for several years.  When my husband and I turned 30 years old, we decided that we wanted to start our family.  That required me to stop taking the birth control pills and to begin planning the next part of our lives.  We planned on 2 or 3 children. We talked about the types of parents we would be, and we made plans around their impending arrival. But the arrival seemed stalled.

The pain was back.  Sometimes it would be debilitating, and it would cause me to miss work. I was also having digestive issues that would cause chronic constipation and discomfort. I started a new job that could be stressful, so I thought it was all stress related. In the winter of 2012, the holidays were rough. After Christmas, I found myself in significant pain. I recently switched doctors and decided to see my new doctor to find out what was going on.

The Diagnosis That Changed Everything

Dr. Melissa Kwak was the first doctor who listened to me when I told her about all the pain I was having. She ordered an MRI that started me on my journey. The MRI found a fibroid the size of a grapefruit on my uterus. She sent me for further testing with Dr. Brett Cassidy and he recommended that I have surgery to have the fibroid removed in February 2013. I was 32 years old. I remember feeling so frustrated that my body could betray me in that way. I know the depth of the betrayal.

The surgery was meant to be laparoscopic. They explained that I would have tiny keyhole incisions made in my abdomen and another in my belly button so that the machine could excise the fibroid without them having to open me up with a lateral incision. They expected everything to go easily and after recovery, we could begin trying to have a baby again. When I woke up from anesthesia, I was in overwhelming pain. I began screaming and the nurses rushed to me. I heard one say, “We need to manage her pain!” I knew immediately that something went wrong. I kept asking over and over what happened, but no one answered me.

“You have endometriosis,” my doctor later explained to me.  They had to abandon the laparoscopic surgery as soon as they could see what they were dealing with.  They had to open me up laterally (like a c-section). I had adhesions all over and this was the reason for my extreme pain during menstruation.  With endometriosis, endometrial tissue is found in other areas of the pelvis. When the body menstruates, the tissue in these other areas, outside the uterus, bleed as well. The body treats these areas as internal bleeding and rushes to heal it and create scar tissue around it. These are called adhesions.  My doctor was able to save my reproductive system and remove the adhesions. He gave us the green light to begin trying to have a baby again.  He explained that being on birth control was unknowingly treating the endometriosis. But to start our family, I could not take medication for the condition. The instructions were to get pregnant fast since there was no cure for endometriosis and the adhesions can return. We were optimistic, but another year passed without a baby.

IVF and the Emotional Toll of Infertility

We realized that it was time to talk to a fertility specialist to assist us. Dr. Cassidy recommended that we see Dr. Charles Miller in Naperville, IL to assist us. However, our insurance didn’t cover Dr. Miler. So, in 2014 we began working with another fertility clinic. The doctor with this center, decided quickly that IVF would be the best option. We were 33 years old, so the odds were in our favor.

At this clinic, we ran into more complications. They had trouble with egg retrieval. They sent me back to Dr. Cassidy for another laparoscopic surgery to remove more endometrial adhesions. We finally got 10 embryos but only 4 survived. They transferred 2 embryos in December 2014. We would have to wait 2 weeks to find out if the embryos took and if we were going to be parents. During that 2-week wait, my father-in-law passed away from heart disease and we were mourning.  I look back on that period with a lot of pain. I often wonder if the grief and the negative emotions I felt made my body inhospitable for those little babies. We found out that the embryos didn’t take a couple days before the funeral, so we grieved my husband’s father, and the loss of the embryos. I fell into a mild depression after that. I admitted this to my doctor, and she suggested that I begin seeing a therapist.  I was dealing with a lot of guilt and grief over my father-in-law passing. I felt like I was selfish in his last days because I was so focused on the embryo transfer, but I also felt that I was a terrible mother to those embryos because I did not provide a positive environment where they could grow.

Infertility can be a lonely thing. Even though I was surrounded by doctors and nurses and friends and family who encouraged me, I still felt alone. I felt profound shame and inadequacy. I didn’t think that I was worthy to be a mother and maybe somehow God had ordained it to be this way.  I received confirmation of my own perceived condemnation when a second embryo transfer did not yield a pregnancy.  I needed time off.  For a year, I didn’t want to think about fertility or trying to have a baby.  But during this time off, the endometriosis did not leave me.  The pain became severe again and I knew that I’d need to address it and decide if we’d want to try to be parents again.  Through this time, we switched to a new insurance. I went to see Dr. Cassidy to ask about another surgery for the endometriosis. He asked us again if we thought about Dr. Charles Miller.  He said he was one of the leading specialists in the area for endometriosis and he could do the surgery. We investigated our insurance coverage, and we were happy to find that Dr. Miller was covered.

Finding the Right Specialist

When we first met with Dr. Charles Miller, it was on a Sunday.  He was dressed in a beautiful suit. He looked outstanding.  He immediately helped us feel at ease. He tailored the treatment plan to me and my unique circumstances. That was refreshing, because our last doctor wanted to use the same protocol with me that she used for every woman she treated, regardless of the diagnosis. We were 35 years old and desperate to make things work. The fertility world talks about age 35 as the gateway into geriatric pregnancy.  The percentages of successful live births begin to go down at this point and risks of birth defects and other issues increase. We were anxious to get started. I had 4 or 5 surgeries, numerous egg retrievals and 3 embryo transfers with Dr. Miller.  I remember, after a disappointing cycle, we sat in Dr. Miller’s office with him.  He was quiet after explaining what happened and we were quiet. I remember asking him not to give up on me. I remember he took my hand and told me that he was willing to fight along with us for as long as we were willing to fight.

In January 2020, I needed another surgery for endometriosis.  I was 39 years old and desperate to try again before I turned 40.  We had one frozen embryo left from the previous cycle. The plan was to have the surgery, do a few more egg retrievals so we could transfer more than one embryo. The odds are always better when you have more than one embryo to transfer. By the summer of 2020 I went for tests, that showed that I wasn’t ovulating after the last surgery and there wasn’t much hope of getting more embryos. Dr. Miller talked to us about donor eggs, but my husband and I didn’t want to give up on the dream of having a child that was a little bit of both of us. So, we decided to transfer the one embryo we had. We decided we were done with the whole IVF process. We started looking into foster care and adoption. It took another 6 months to get insurance and all other circumstances to line up.

One Last Chance at Motherhood

In February 2021, a few months after I turned 40-years-old, I came into the office to transfer the last embryo we had frozen. We were in the thick of COVID protocols so my husband couldn’t come in with me. When the doctor came in, I tearfully told him about the amazing impact he had on my life.  I told him that no matter the outcome, I was just so grateful that I had the opportunity to reach for my dream when so many other women didn’t even get the chance to try.  We both cried and he told me that he had a great feeling about that transfer. I had a sense of peace after that last cycle. In the past I did acupuncture after the embryo transfers to increase the odds of the embryo taking. But this last time, we chose to go to my father’s house and pray.  My husband, my father, and I joined hands and prayed the most beautiful prayer about gratitude and joy regardless of the outcome.

The Call That Changed Everything

On the morning of my blood test after the 2-week-wait, I felt hopeful and peaceful.  I knew this was going to be my last time going through the process and maybe knowing this gave me peace that day.  Normally, the results of the pregnancy tests came to us on a portal app on my cell phone. I thought that I wouldn’t hear anything until the afternoon.  During my morning break from work, I decided to lay down and take a nap. Before I could fall asleep, my phone started ringing and it was Dr. Miller’s office. They never called before on pregnancy test day, so my heart was in my throat when I answered the phone. The nurses in the office had me on speaker phone. The phlebotomist, the ultrasound tech, and two of the nurses were gathered around the phone.  They asked me if I was sitting down. When I told them I was, one of the girls screamed, “You’re pregnant!”  I immediately fell on my knees. I cried on the phone with them for what felt like an hour. I could hear a few ladies crying with me and I heard them yelling “Congratulations!’  I couldn’t even speak. It was 10 years of waiting. 10 years of crying. 10 years of wondering what I had done wrong, 10 years of disappointments. The emotion that flowed through my body in that moment was pure joy.

A Dream Come True

My pregnancy went forward without any complications. We were blessed because I was healthy, and the baby was healthy.  I gave birth to a beautiful baby boy named Koah. I am certain that I just gazed at him for hours. I still love to look at him. We had waited so long for him, and he had waited for us as a frozen embryo.  He was the very last to be transferred, but he was destined to make it into our arms. Koah is our only child, but our hearts remain open and excited about this beautiful life we will have with our son. I knew from the moment that my pregnancy was confirmed that I would share this story. I knew that I wanted to encourage other women who feel isolated while going through this journey.   I persevered and I was able to experience the miracle of feeling a life growing inside me. I can watch him grow as a walking and breathing testament to my own strength and endurance. The journey taught me to feel worthy regardless of the outcome and I am looking forward to helping other women feel empowered and strong.

-Kasi

by Marketing