“In 2010, I was head over heels in love with my now husband, 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 if 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.
My wedding day on October 7, 2011, was the greatest day of my life. I had never felt more beautiful. The hair, the makeup. The DRESS! I didn’t want to take it off. Our vows were personal and heartfelt. I felt so incredibly loved.
‘For better or worse, in sickness and in health’… neither Brian or I knew at that time how relevant those words would become so soon into our marriage.
Late in 2012, my brother, Jonathan, who had dealt with Type 1 diabetes his whole life, became very ill and was put on dialysis due to kidney failure. 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 I had seen changed my birth control and said 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 as a veterinary technician 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 this new doctor 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 best 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 pounds. During this time my pain was still present. It never went away.
2015 was the worst year of my life. My 25-year-old brother passed away in April and I felt like my world was crashing in on itself. A part of me died that day with him. 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… not only emotionally, but also physically. If I wasn’t at work I was laying on the couch watching T.V. trying to ignore what was happening in my heart. I was broken and I turned to food. I gained another 15 pounds. Depression also 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 the 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. I also thought that maybe having a baby would bring some much needed joy into my life and also to my parents. I was so excited to tell Brian I was ready to have a baby, only to find out he was not. At first I was confused. He had always told me that he would be ready when I was ready. But it turns out that 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 the doctor my heart. She assured me 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 pounds. I was working on ME. One of my goals was to fit back into my wedding dress. That was when I felt most like me and when I was happy. 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. I tried on my dress… it didn’t fit. I felt like a failure.
During the first weeks of September, I was at the state 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, looked down 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 an 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. It was December… 4 months of nonstop bleeding. 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 held my hand and told me to talk with my husband, but that she would support me in any decision I had made.
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 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, ‘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 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 if 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 say, 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.
January 28th, 2017. Surgery day. When I woke up I was so happy to hear I was able to keep my ovaries… well, one and a half. The endometrioma on my ovary they thought I had was actually a rare tumor so the doctor removed that along with as much endometriosis she could find. I was told by my doctor’s colleague she was pretty impressed with the size of my uterus and the amount of endometriosis she saw, along with a large amount of scar tissue. I was relieved. There was a serious reason for my pain and now it was gone.
The next few months were hard. I dealt with every emotion you could imagine. I was happy to be free of pain but worried I made a rash decision. I grieved the loss of my baby that I will never feel growing inside me. I was angry at God for taking my brother so soon. He was the one person I felt like truly understood me and all I wanted to do was talk to him. I was scared of the future, but I was also hopeful.
After going back to work I found myself falling into the same routine I had gotten myself into. My days off work were spent on the couch doing nothing. One day I just woke up! I can’t explain it other than that. I didn’t want to be this person who just goes through the motions. I was unhappy with how I looked. The weight I had gained over the years was hard on my self-esteem. I had an excuse for it but who doesn’t? Every time I looked in the mirror I saw the girl with Endometriosis. The girl whose brother died. The girl who had given up. I was done being that girl. I wanted to feel beautiful again.
In September I found a gym that had structured workouts and coaches and I fell in love with fitness almost immediately after joining. My husband was so supportive and was happy to see me being active and finding my joy again. I committed to changing my eating habits and worked on changing my brain if you will… before if I felt depressed I would eat. Now if I feel depressed I move. Go hiking, take the dogs for a walk. SOMETHING!
Fast forward 8 months. I had lost 25 pounds and was finding myself feeling amazing. I was no longer in constant physical pain. I was no longer dwelling in my grief and letting it control me. I was feeling like me again, so I tried on my wedding dress. IT FIT! I literally started crying.
My husband hugged me and told me he has always thought I was beautiful, but he could tell how hard I had worked and saw that I felt beautiful. I immediately went back to my wedding day and it had to be celebrated. The old me had died. It was time to show the world that you can do hard things. You are not alone. You are worth it. You are fierce. You are strong. You are beautiful.
Every girl wants to feel beautiful and empowered. My sweet friend Emily had seen my struggles and had always wanted to do a ‘fierce bridal session.’ As soon as she told me this, I knew it was something I wanted to do. Yes, I’ve been married for 7 years but I never had bridal portraits taken. I have come so far and so much has changed. I’m a different person. A confident, proud, happy, healthy woman who can accomplish what I put my mind to. The old me hadn’t died but grown into who I am today. I wanted to portray feeling free. Free from my depression, my pain, my grief. I couldn’t have asked for a better photo session. It was the most uplifting experience. What an awesome way to show the world that I am not defined by grief.”
This story was submitted to Love What Matters by Rachel Armstrong, 31, of Sandy, Utah. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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