All my life I have known that it is ok to feel your emotions. I was never ashamed to be upset about something and to allow myself to cry. But as I have gotten older it has been harder for me to embrace feeling sad or angry. Maybe because as I have gotten older those are emotions that I often feel... as my therapist says: "Allow yourself to feel the emotion, breathe through it, and let it go".
...this is me breathing.
I am sad. How in the world can I be sad about something I never had? Something I knew I would never have?
In 2010, I was head over heals in love with Brian and we were recently engaged. I remember having the hard conversations that you are supposed to have before you get married... how will we raise our children? Religion, school, bullies, sexual preferences... etc. We were on the same page about everything and my heart was overwhelmed with happiness. I was going to grow and help raise a tiny human with my favorite person in the world! But then the words came out of my mouth "what if we can't have a baby"? And I'll never forget what Brian said. "My love for you will never change. Not having a baby will not change that. We will just deal with that challenge when it comes up". We both knew it was already going to be a challenge. I was diagnosed with PCOS (polycystic ovarian syndrome) and was on birth control to help manage the pain that came with it. At that time, a baby was far in the future. I was excited to start my life with Brian.
Late in 2012, Jonathan got really sick and was put on dialysis. I was in school full time and working full time but my world stopped. My entire focus was on my brother and taking care of my family despite the pain I was also in. I knew something was wrong with me but Jonathan was all I cared about. Every gynecologist that I had seen changed my birth control and said that I was fine so I had to believe them, right? Pelvic exams and ultrasounds showed that I was "fine". I had told myself that long, painful periods were normal and that intercourse is uncomfortable. That's all I had ever known so that was normal, right?
In 2014, I graduated college and was working in a clinic full time. I was happy. I was proud. Brian and I were doing well and had been married for 3 years so of course the questions started "when are you going to have a baby"... but Jonathan was getting worse. It made no sense to me how people could ask me to selfishly have a child when my brother was dying. How could I be happy about bringing in a new life when I was watching one leave me?
The pain in my abdomen was getting worse and worse and I had horrible back pain. I was taking medication almost daily for the pain. I felt like I was crazy and that maybe I was imagining the pain or that I just wasn't as strong as every other girl. A friend of mine convinced me to see her gynecologist who had helped her so much... so I made the appointment.
In August that year I met with Dr. Twelves and told her my story. I cried in her office and she assured me that I wasn't crazy and there was a reason for my pain. We scheduled an exploratory laparoscopy to see what was going on.
2 weeks later I had the surgery and I was diagnosed with endometriosis... an answer! A disease that is not seen on ultrasound or during a pelvic exam. A disease that causes painful, long periods, back pain, nausea, digestive issues, bloating, headaches, painful intercourse, extreme fatigue, and infertility. A disease that had ruined my quality of life. I was not crazy. She also found a fibroid that decided to be buddies with my uterus. Her treatment was Lupron to help slow the growth of the fibroid and to clear up the endometriosis. Lupron put me into medically induced menopause at 27 years old. I had two rounds, both lasting 3 months. I dealt with hot flashes, night sweats, mood swings, headaches, and gained almost 40 lbs(my poor husband). During this time my pain was still present. It never went away.
2015 was the worst year of my life. My brother passed away in April and I felt like my world was crashing in on itself. He was my best friend, my person, my world. I watched my parents lay their baby's ashes to rest and they were broken. Our family was broken. How would we ever find joy again?
I honestly don't remember most of what happened in 2015. My depression consumed me and I changed dramatically. Depression makes physical pain worse which makes depression worse. It's a vicious cycle. My daily pain was worse, especially on my right side. I panicked and called my doctor. She wanted to do another exploratory laparoscopy. What she found was that, despite the Lupron, my fibroid hadn't changed but had in fact, grown. She also saw that my appendix was adhered to my bladder from endometriosis.
We decided to start taking birth control continuously to keep the endo at bay but that overall, I was doing great. She was sure that that pain I was feeling was from my appendix yanked around by my dumb bladder. Finally, good news.
2016 was a year of rebirth. I was determined to be a happier, healthier me. In March, I went to Zion with a friend and had kind of an awakening to what I wanted in life. We stayed with her aunt who has 4 adorable young, blonde haired boys. They immediately included me in their lives. I watched them play, and learn, and watched their parents love on them. Suddenly, I wanted that. I wanted that love and that joy back in my life. I thought maybe a baby could give me that. Maybe it could give my parents that. Maybe it's ok to be happy and excited. Maybe.
I came home and was so excited to tell Brian that I was ready to have a baby only to find out that he was not. He was concerned about my health and worried that we would try to have a baby and end up heartbroken. He encouraged me to see the doctor again and see what she said and recommended.
I made the appointment and told her my heart. She assured me that she could get me pregnant and if after 6 months of trying nothing happened? we'd look again and see if the endo was back. The only catch was that I would have to go off my birth control... the only thing that was keeping me pain free for the first time in 8 years. I was terrified to try and be miserable. So we didn't. We were both scared and I was heartbroken.
I had read eating healthy and exercising can sometimes help with endometriosis (as it does with everything)... So I busted my ass at the gym and lost 35 lbs. I was working on ME. I would not let this disease take over my life. I was tired of crying, tired of feeling defeated, tired of emotional and physical pain. I was doing well other than feeling exhausted all the time, I just accounted that to working 11 hour days at a physically demanding job.
During the first week of September, I was at the fair when I was overwhelmed by a gut wrenching pain and immediately vomited in the nearest garbage can. I thought I ate something that didn't sit right so I went to the bathroom and all I saw was blood. I was in excruciating pain and had to go home. That was the beginning of a period that never stopped. No exaggeration. For some reason I wasn't worried. This is "normal" in women who have endometriosis. My doctor put me on a stronger dose of birth control to see if that would help. It only helped some but I was still bleeding every day and my pain became constant again. My left side was in terrible pain where it would drop me to the floor.
I had an ultrasound and was told I had a cyst and to come back in 6 weeks to see if it goes away. I came back and it had grown. My cyst was actually a endometrioma, a blood filled cyst that only gets bigger and is caused by endometriosis. It was overtaking my ovary and my doctor wanted me to have surgery to have it removed and hopefully keep my ovary.
I went home and cried, and cried, and cried. More surgery. More treatment. When was it going to end? Nothing we had tried over the last 3 years had worked. They were all "bandaids" and nothing truly fixed anything. If anything, I was worse than I had ever been.
I felt defeated. I was tired and constantly felt like I was not able to give my all in all aspects of life. This disease was winning and I was tired of fighting, tired of hurting every single day, tired of pretending that everything was fine when it wasn't. I called my doctor to talk about options.
She was kind and gentle with her words and gave me three options. The first was to try Lupron again and just see. I couldn't. I told her no immediately. The side effects were almost worse than the disease and it didn't go away. The second was a uterine ablation with an endometrioma removal. Basically she would essentially burn away the uterine lining and cut off the blood supply to my fibroid and remove the ovary with the endometrioma. My bleeding would stop and my pain on my left side would be gone. This procedure sounded like the best option but she told me it would be almost impossible to get pregnant if we did that. We could always try IVF but it would be very hard. There was also the chance that fibroids would continue to grow and I would have to stay on birth control to try and keep the endometriosis from getting worse. The third was a total hysterectomy. Hysterectomy... not a word I was hoping to hear at 29. She told me to think about it and to talk with Brian. She then held my hand and told me that she would support me in any decision that I make.
I called my mom and burst into tears. We both already knew what the best option would be. At that moment it felt real and I felt like a failure as a woman. The one thing that I should be able to do as a woman is to grow a baby and I can't do that. She stopped me in mid sentence and prayed with me.
For the next week that's all I did was pray. Brian asked a million questions and finally he asked me what my heart was telling me to do. With tears streaming down my face I told him that "I miss being me, I miss being happy, I want my quality of life back... I think I need to have a hysterectomy". He held me while I cried and told me that he was so sorry and that he loved me and agreed with me. I made the call the next day to set up the surgery.
I had to wait 7 weeks until my surgery. It felt like forever and I couldn't wait for the day of surgery. I worked through the pain... often times taking bathroom breaks to vomit or having to sit on the floor before I passed out. I stayed strong and was confident about my decision. Who could live with this daily pain? But the night before I couldn't believe it was here. I broke down at my clinic in front of my coworkers and just bawled. Was this the right choice? What I they take my uterus and I still have pain? ...I will never be able to have MY baby... Brian's baby. It was all so huge and so scary. I have to just say that I work with some of the greatest women I have ever met. They come from all walks of life and I was overwhelmed at the amount of love that was poured on me that night.
I came home and sat in the shower for an hour holding my stomach and praying. I was listening to Leeland and the lyrics from Carried To The Table came on.
"Wounded and forsaken, I was shattered by the fall. Broken and forgotten, feeling lost and all alone. Summoned by the King, into the Master's courts. Lifted by the Savior, and cradled in His arms...
Fighting thoughts of fear, and wondering why He called my name. Am I good enough to share this cup, this world has left me lame. Even in my weakness, the Savior called my name. In His holy presence I'm healed and unashamed.
You carried me, my God. You carried me."
In that moment I knew... God's got me.
It has been almost a week since my surgery and I can honestly say that I feel great. My back pain is gone, my abdominal pain is gone, my nausea is gone, my chronic never ending horrible fatigue is gone!! And I still have my ovaries!!! Well... one and half :) I was told by my doctor's colleague that she was pretty impressed with the size of my uterus and the amount of endometriosis that she saw, along with a large amount of scar tissue. I was relieved.
Ladies, trust your body. If someone tells you that are fine when you don't feel fine get another opinion. I saw 6 different gynecologists before I found someone who believed me. Please known that you are not alone and there is hope. Yes, my ability to carry a child was taken away. It was my choice... one that was NOT easy. Endometriosis never goes away but you know what? I'm hopeful. It will take time to heal, physically and emotionally. I know this was the best decision for me. I'm excited for what the future holds. I'm excited for the Rachel that everyone knows to come back.
After writing this, with my pit bull snuggled up beside me, I am no longer sad. I am hopeful.
...this is me letting it go.
