“‘Does the pain shoot down the back of your legs? Kind of like sciatic nerve pain?,’ my friend Melissa asked me while I filled my coffee cup to the brim.
‘Yes. And it starts in my hips. It feels like there are actual knives inside of my pelvic bowl region, carving me out from the inside. Like…pulling my hips apart and then shooting daggers down my legs. But my doctor doesn’t seem to believe this is worse than the typical woman’s period cramps.’ I steadied myself with my hand on the table, talking slowly and sucking in deep breaths between each word.
Talking was painful, standing a labor, sitting made me achy, laying down in the fetal position felt like a surrender to my reality. Chronic pain through my pelvic bowl shooting down the back of my legs seemed to be my fate.
‘I honestly think you have endometriosis,’ Melissa stated. She had walked the journey of multiple surgeries to remove the endometrium, which was growing in all the wrong places. Her doctor led her through various hormonal birth controls with the hope to curve the pain and get it under control. ‘You should go see Amy Card! She is the best in the area.’
And so I did. I made an appointment months out, because she was booked full. We met, she joined Melissa’s suspicion of me likely having endometriosis, and we scheduled a laser laparoscopy.
‘Essentially, endometriosis is a chronic autoimmune disease in which there is no way to cure it. But we can do different things to tame or curb the pain. Depending on how much and how deep the implants, cysts, and/or tissues are, your organs are likely being stuck together kind of like super glue. Nothing can move quite right, and it can often be so deep into your organs or tissues that the pain can be crippling. The only sure way to diagnose this disease is through surgery. It can also cause infertility or delayed fertility. I will go in through two different small incisions, one in your belly button, the other right below your panty line, and I will laser/burn off all the spots of endo I can see.’
Dr. Card explained to me the disease I had been reading all about online for months now.
I nodded, stoked to find some relief. It seemed as the months went on, the pain worsened. I didn’t want to get on hormonal birth control for my own reasons, so surgery was my best option at this point to live a somewhat pain-free life.
October 2013 was the first of my surgeries in an attempt to beat this disease and live pain-free.
The first six months post operation were the most blissful; I couldn’t remember the last time I felt so light! I could move about my day without constantly feeling physically weighed down from inside, I could stand or walk or sit without feeling like a pumpkin being carved out.
It didn’t take long for the pain to slowly inch its way back into my life, as the disease made its way back into my body. Looking back and knowing what I know now, it was never really removed because as I understand, the laser and heat simply burned off the top layers of endometriosis. It didn’t remove it from its roots.
A second surgery was scheduled after an entire year of intense pain, October 2015.
I got pregnant after trying to conceive for two years, plus a miscarriage, and those months after our biological son was born were pain free as well. I breastfed for 17 months, my menstruation returning around month 12 along with the pain of endometriosis.
We had moved cities and I was feeling discouraged by the constant pain. I read about women having hysterectomies in their 20s with the hope their pain would subside, and the tragic reality that because endometriosis grows all over multiple organs, it ended up returning. Even without their uterus.
I had another miscarriage is 2018, after baby was clearly healthy through two different ultrasounds. I wondered if it was because endometriosis had been weakening my uterus, or maybe there was endometriosis or scar tissue all around, or maybe it was my Factor V Leiden.
I joined a Facebook group titled Nancy’s Nook Endometriosis Education and read story after story of women with journeys such as mine. There are doctors and educators in this Facebook group and I researched all about how excision surgery was much more successful than laser or ablation surgery, because with excision surgery, the doctor goes in and cuts it out from its root.
Inside this Facebook group are PDF documents and articles and lists of doctors who specialize in this particular surgery in different areas of our country. Sure enough, there were a few doctors in my Pacific Northwest part of the United States.
I made an appointment with what felt like my millionth doctor regarding this disease and the pain it had been causing me. Narcotics didn’t work, CBD didn’t work — inserts, patches, oil, you name it, regular ibuprofen didn’t touch it. Laying on a heating pad would help me for a bit, but I have kids and work and life to live, I can’t be laying down all day every day.
She talked through what she recommends we do, suggested a specific hormone for me to continue preventing its growth once she removes it all, and also recommended I have my appendix out. She confidently said if there was any endo wrapped around a tube or an intestine, she would leave that and consult with a specialist. Dr. Pendergrass would take care of me and was excited to help me live as pain-free as possible, without damaging my important organs.
I counted down the days to this surgery. Work was often unbearable, more days than not out of the month were infused with pain. Not only is physical pain draining, but the emotional and mental exhaustion of fighting to let it get me down was heavy. It would be easy to walk around my life disappointed and discouraged, constantly down and out because of perpetual pain. I often breathed deeply and slowly, focusing on relaxing my body as much as possible, remembering the beautiful things and people right in front of me. Pain has a way of trying to destruct all the reasons you have to be grateful, and I didn’t want that to happen to me. I didn’t want to allow the pain to make me a bitter person.
Don’t get me wrong: I had many moments crying in bed in the fetal position, angry that my body was letting me down, making living so painful. But I’d let myself have those moments, remind myself I still have a very capable body, and keep going.
Surgery day was here at last! In total I have had 10 surgeries, so I wasn’t scared of going under anesthesia. More than anything I fought worry that I wouldn’t end up pain-free.
My man Kevin made sure to be fully available for me, clearing his schedule so he can take me there and back, and take care of me while I healed. My two 3-year-old boys went on a week-long trip with their dad, so I wasn’t picking them up or having them jump on me.
Surgery was scheduled for two hours but ended up being almost three; Dr. Pendergrass said she had never seen so much scar tissue and endometriosis cementing a uterus to an abdominal wall! There were endometriosis implants and cysts in other places too, but the main work was chiseling away and gently rescuing my uterus and abdominal wall. No wonder I had that miscarriage last year; there was no way for my uterus to grow or thicken with it basically being super-glued to my abdominal wall!
Surgery was July 9, 2019. My sister was getting married July 13 and I needed to be ready to document her wedding, as the photographer. A bit nervous about that situation, I focused on laying low and walking around the house as balanced as possible. Narcotics have a way of slowing down healing, so I planned to be on my oxycodone for the first three full days (Wednesday, Thursday, Friday) and being off them by Saturday for the wedding.
With my man helping me and feeding me healthy foods, I was able to get off the oxy by Thursday, and just be on a high dose of ibuprofen. He drove us the three hours to the gorgeous state park of Smith Rock and I was on top of it by Saturday! I was of course incredibly sore the next day, but nothing was injured.
I am more than a month post op as I write this. I have done a few photoshoots and one barista shift and am feeling super good! We hiked three miles with our four kids on post-op day seven, and I was slower and less energetic than typical, BUT I did it and I did it well. I am tender, but not too bad at all.
I now have four more incisions on my abdomen, but they feel like a small price to pay for a pain-free life. Or at least, a few years. I’ll of course be updating people on my Instagram, and we will see how long I get to live pain-free!
Instead of holding my breath waiting for the pain to return, I will count my blessings and be incredibly grateful for the access I have to great health care and insurance.
I’m grateful for an amazing doctor who was willing to listen and validate that I am not crazy, that this pain is worse than a typical menstruation cycle, and that yes! It affects daily living. I’m grateful for a man willing to clear his schedule to take care of me and for my 3-year-old toddlers being gentle and kissing my tummy owies.
Cheers to being endometriosis free!”
This story was submitted to Love What Matters by Natalie Brenner of Portland, Oregon. You can follow her journey on Instagram, Facebook and her website. Learn more about her book here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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