I’m writing this on one of those days, where it feels impossible to get out of bed.
I have these days that are so intense, I know I just need to stay put and ride the waves of pain, until they have passed.
I never used to have any pain at all. I always felt healthy and strong, that I could do whatever I please, whenever. But one day I lost feeling in my fingers, and the next week my arms started to burn, and over time I developed a full and raging Fibromyalgia, which made everything in my body hurt. All the time.
Having Fibromyalgia was like walking in quicksand, I kept moving and yet continually slowed by sinking further into the pain. My life became a haze, for both body and emotional distress can steal your ability to focus, to motivate and feel joy. First, there were the days when I would need to nap to get through the day. Then there came the time when I couldn’t work or engage with anything social either, so I stayed in bed all day, curled up, mourning the loss of the life I once had. As my illness progressed, I was frozen in a block of fear, always worried about what would come next, and what would hurt me that I couldn’t yet see.
But when I began to recover, receive proper treatment, and life became livable again, there was one stubborn part that refused to leave. I had agonizing uterine cramps at different parts of the month, and I began to have ovarian cysts ruptures every month.
I remember my first cyst rupture. My son was a baby, and one early morning I went to retrieve him from his crib. I leaned down to pick him up and as I rose I was hit with blinding pain in my abdomen. When my husband came home from shul I knew that we needed to go to the ER right away- something was not right. After that experience, every month it kept happening. As I was fighting to get back my mobility and my faith that I would be ok, I would always have this one piece holding me back. I was afraid to leave the house for long periods of time on my own. What would happen if I had a cyst rupture when I was driving on the road or out at a store and I couldn’t get home? I let the fear take over my life and keep it small for far too long.
Every month, when the rupture became unbearable, the doctor would send me to the hospital to make sure that I hadn’t had a twisted ovary that would require emergency surgery. I would sit writhing in the wheelchair they gave us, while I endured invasive and painful test after test, for them to confirm what we already knew, but also that I wasn’t in further danger.
When the doctors decided that we couldn’t wait any longer, even though my hormones were still off from being ill, I needed to be on birth control pills to control the rupturing. After much trial and error, I found a pill that does not stop the cysts from growing but does stop them from rupturing (for the most part). So though I do experience ovarian pain throughout the month, thank God, it is manageable.
As I worked to conquer the fear that all this physical pain brought into my life, I felt something change. My periods became far more painful, and at certain times of the month, it became hard to move because I felt so bloated, aching and swollen. I knew something was not right, and I might need a surgeon this time around.
Due to the secondary infertility, I was experiencing, I did not want to go to an OB-GYN, knowing I would sit in the waiting room with all the women with swollen bellies and hope in their hearts. I didn’t want to see the beautiful baby faces on the walls. I wanted an expert surgeon who specialized in gynecological issues. I wanted someone who would be compassionate and understanding of my struggle, and help me in a non-triggering and clinical setting.
Last April, I found a doctor whose specialty is gynecological laparoscopy, and she was everything I was looking for. She was brilliant and compassionate, and sat with me as long as I needed and answered all my questions. She recommended an endometrial laparoscopy. She thought perhaps something was growing around my uterus that didn’t belong. It would be a relatively quick and easy surgery; if she found Endometriosis she would take it out, and I would heal. There was also a mass in my ovary that needed to be looked at and removed.
I knew surgery was the right call, but I was so frightened. I had worked so hard to regain my life, I didn’t know how my body would react to it all. Recovering from my c-section was no picnic, and I really didn’t want to go through that again. I was nervous to be in bed for several weeks- afraid that it would trigger those bad feelings, of losing it all again. We were also about to make aliyah, what if my recovery was not as planned and we couldn’t go? This time, I had so much to lose.
I was so anxious leading up to the surgery, that I could barely breathe. As I sat in the hospital bed, prepped that morning, the sky opened up on the skylight above my bed. As the pitter patter of the rain landed above my head, I closed my eyes and prayed that all would be ok and that maybe I would finally get an answer to what was taking over my life.
Each doctor and nurse was nicer than the next that morning. They offered me to walk to the operating room instead of being wheeled in. They told me that some patients felt it was empowering, and so I took them up on their offer. In my little slipper socks and covered by multiple hospital gowns and a warm blanket, I marched down to the operating room.
There, something changed. I looked around the room, and every doctor and nurse in there was a woman; their camaraderie felt like a sisterhood. They were all smiling at me warmly, promising me they would take good care of me. I felt nurtured. I felt like God had put me in good hands. As I drifted off to nothingness, the last thing I said was, “I am relinquishing control to you all now, and I trust you. I am not afraid.”
When I awoke, the doctor told me she had not found Endometriosis, but she had found many adhesions connecting my uterus to other organs. She guessed they were scar tissue from my emergency c-section. I was relieved to have some form of an answer.
The recovery from surgery was slow and triggering. Being in bed all day allowed many negative thoughts and memories to creep back up into my psyche. But ultimately I got my mobility back. Some of the surgical pain subsided, and I was cleared to continue to live as normal.
It is now about six months since that experience. This morning, I am working from bed. I have a hot water bottle sitting on my stomach, and a vat of extra strength Tylenol sitting next to me. I still have these days occasionally. When the pain is so bad, that I know I need to hibernate for a few days, until it passes. Then life can resume as normal. I hate these days, but I do not fear them. I just understand that for many women like me who experience gynecological pain, these days can be a part of life. We don’t always get the diagnosis that “fixes” us.
We need to learn to live in between doctors appointments and hopes for a pain-free future. I’ve done a lot of emotional work, to not let these days knock me into depression. But I do occasionally let myself feel sad, or angry or frustrated. I think it’s healthy to let myself feel what I need to, but let it go and then move on. Because for women like me, the most important thing is to not lose faith that tomorrow, or next month, or next year- might be better. Maybe they will develop better treatments, or more accurate diagnosis, or ways to cure us.
I think this experience has made me more patient. I have learned to live with the inevitability that challenging times come, but that I have the physical and emotional endurance to make it through to the other side of struggle. This is a lesson that could not possibly come earlier than it arrived, for to really internalize this message I needed to prove to myself I could both live well and be in pain, sometimes at the same time. Pain does not need to take over my life but may be woven within, a reminder of the vulnerability of my humanity, and the importance of cherishing every day, good or difficult, that may come.