“I experienced strange and unexplained symptoms my whole life. I spent two years of high school worrying about my sick mother who has Lyme. I went to college, was diagnosed with Lyme myself, crashed, came home, and began my seemingly endless road to healing. Simple enough right? I had all the usual Lyme symptoms. I felt like I couldn’t function. It was really hard. But the one thing I’ve never talked about is the endometriosis symptoms, and how those days and nights haunt me the most.
‘It’s just cramps. All girls have cramps.’
‘Are you on your period again?’
‘You went home from school for that?’
‘Let’s be honest Claire, you’re not the greatest at handling pain.’
All these comments were thrown at me so many times in high school and that I often felt embarrassed and ashamed for existing in a female body. If this piercing pain that brought me to my knees in tears and sent me home from school was so normal for so many women, then how come I never saw other girls on the floor gasping for air because of its excruciating nature? How come other girls didn’t stay home every month? How come I was the one girl in the world that had pain that was THIS BAD? I couldn’t understand how this was normal or how anyone could live with it. And I often felt confused when all doctors could tell me was that I was young and it would even out. It never did.
‘What does your pain feel like?,’ is the most common question I receive, and I think it’s about time that somebody finally put words to this kind of pain:
It’s like someone is squeezing one of your organs as hard as they possibly can, only to slightly release their grip and then repeat the process over again.
It’s like knives being pierced in and out in multiple waves.
It’s like someone taking sandpaper to your lower abdomen.
It feels like something is trying to pull your hips out of socket and like your legs are going to give way at any moment.
It’s like being in full blown labor for three to five days, every month, for the rest of your life.
Don’t believe me? Spend one month in my body and you will.
The first time I experienced pain so excruciating it caused me to have a seizure was one of the most frightening days of my life. It was as if I could feel my body deciding to check out from this dreadful existence, but not enough to kill me. I spent seemingly endless amounts of time on my bathroom floor with my head over the toilet because when your body is in that much pain, you can’t manage to keep anything down. The nightmare continued as I found myself in a position where I couldn’t walk across a room by myself, but simultaneously I couldn’t lay in a bed and wait for the pain to gradually increase anymore. I remember my dad would help me walk around the house through these flares because walking was slightly less painful than laying down, which placed all the pressure where the pain was. There were so many nights I prayed for the sweet release of death, and I often wondered if I was destined to do this for the rest of my life. I remember screaming to just rip it all out and make it stop and I often felt like I just couldn’t do it anymore. I would beg every month… ‘Please… not another month of this…’
I didn’t know people actually lived like this. My lack of awareness for how dark and frightening life could be is astonishing. I didn’t know I’d ever heat bath water so hot it burned because I was so desperate for pain relief, and I never knew all the medications that doctors prescribed wouldn’t work, and I never knew this existence was something that one in every 10 women experience on a constant basis. Pain changes you, and it changed me with every flare, every month, every day as I fought to remain sane through it all. I didn’t even know that PTSD could come from physical pain, but now I find myself trapped in flashbacks every month, wondering if one day that level of excruciating pain will come back.
I didn’t know doctors would treat me so badly as if it were all in my head. I chose to go natural. I chose to say no to medications, birth control, and painful surgeries that are no guaranteed cure. Why would anyone want to listen to any medical professional that treats you as if your pain is all physiological and that ibuprofen and an anti-depressant will solve it? I didn’t have the option of medications because I found the more medications I took, the more Lyme symptoms would appear. Why would I trade one symptom for another that is equally as painful? Why did this road seem like this endless pit of options without answers?
What I didn’t know then was that endometriosis and Lyme disease have a direct correlation. One can feed the other, and my endo battle had everything to do with my Lyme battle. Once I learned that truth, a wealth of knowledge seemed to pour down on my family as we learned a multitude of facts about Lyme and endo.
We learned Lyme disease feeds parasites in your system (including in your uterus and ovaries), and those parasites and bacteria in your uterus can then cause endometrium growth, lesions, heavy bleeding, and insanely painful menstrual cycles. We learned how hormones play into illnesses like this, and how balancing the hormones can help balance the body, which will then reduce pain. And we learned that removing your uterus or painful excision surgeries can cause major damage to your immune system and the rest of your body. And with that knowledge, I figured that if I can get rid of the Lyme, I can get rid of the endo. I didn’t know at the time exactly what that meant, but I did know I had to try everything in my power to retrieve my quality of life back, and if that meant doing every ‘crazy’ natural protocol out there, it was worth it if I could keep my uterus.
And so I proceeded with as much courage and strength that I could muster, and after years of constant struggle and perseverance, I am where I am at now.
I believe we live in a society that promotes instantaneous solutions. Instant gratification, instant entertainment, instant relief from discomfort, and instant healing. That’s a nice thought, but life is not always meant to be instant and easy, and it was and is far from easy for me, but I know that I’m doing the right thing. I spent years gritting my teeth through the pain, and hoping that something we were doing was working. I spent so many dark nights wondering if I should just give in and take it all out. I ran images in my head of downing an entire bottle of pain pills because I was desperate for relief. I spent nights in tears thinking my dream of having children would never come to be, and I now spend many a day in tears because the memory of those excruciating days and nights haunts me.
With all that said, the battle has been completely worth it. Currently, my pain is still there, and it’s still difficult, discouraging, and arduous at times. My life still revolves around the menstrual cycle and I often find myself having to reschedule plans, or not make them at all because I know that an endo flare is coming. One of the most difficult parts of it all is having to explain to people how I know when a flare is coming, and then watch the frequent blank stares and speechless mannerisms. There are still difficulties, but the differences are miraculous and I find myself filled with gratitude for the immense progress.
I no longer have seizures and I no longer find myself in pain that is so severe it brings me to my knees in screams. I no longer spend three days out of every month throwing up. I no longer question if I’m finding the right protocols because I can feel them working inside me for the better. My healing may not be instant, but it is effective. And along the way, my pain is necessary because the things that God teaches me through all this pain often leaves me in awe.
The reality is that God is greater than all of this. He’s greater than any pain, heartbreak, or agony. He’s greater than the devastating plague of Lyme disease. And when I find myself forgetting His greatness and love for His children, I grasp onto the fact that He’s brought me this far… and He will not forsake me now. There may be no words for the full extent of pain and suffering from endometriosis and Lyme disease, but my attempted words will rest here in hope to bring light and hope to the woman on her bathroom floor screaming, because you’re not crazy, and it’s very real, and through it all, you are never alone.”
Read more about Claire’s chronic illness:
Do you know someone who could benefit from this story? Please SHARE on Facebook to let them know a community of support is available.