When Natalie Archer went to her local pain clinic to find out what was causing her severe chronic pain and how to cure it, she left not with answers, but even more pain. “As I drove out of the clinic in the passenger seat of my dad’s car, I burst into tears. I had so many questions,” she says.
Though the pain was later revealed to be caused by adenomyosis, the doctors at the clinic could offer Natalie no answers or even solutions. “The doctors at the clinic basically told me I was likely to experience this for the rest of my life — mumbling something about pain memory — and that my depression was likely to be making my pain worse,” she recalls.
“If my pain was pain memory, why was it cyclical? Why did it fluctuate depending on the time of the month? Why were these doctors not acknowledging that the depression was possibly caused by the pain, and not the other way around?”
The lack of answers or insight prompted Natalie to take matters into her own hands.
“I started doing some research online. What I found was an amazing, intelligent group of women who had started educational and supportive Facebook groups, websites, and Instagram pages. It was a treasure trove of information,” she recalls. “I went from feeling helpless to feeling validated and in control as I began to understand my symptoms.”
Thanks in large part to taking things into her own hands, Natalie has since found the answers she needed, and has received diagnoses of endometriosis and adenomyosis. Her journey online, meanwhile, connected her with Jenneh Bockari, whom she met via Instagram.
Together the pair have co-founded The Endometriosis Coalition. “We helped and supported each other, but also shared a common desire to change the way things work in the endo field,” Natalie says. The organization is committed to raising awareness about endometriosis, dispelling myths, and sharing useful tips for women living with it.
We caught up with Natalie to learn more about The Endometriosis Coalition and her journey with the condition.
Q&A with Natalie Archer of The Endometriosis Coalition
When were you diagnosed with endometriosis, and how did it affect you physically and emotionally?
After years of severe period pain slowly becoming chronic pelvic pain, I actually diagnosed myself with endometriosis. I had been discussing my symptoms with a colleague, and she mentioned it to me. I read about it on a few forums. And I made an appointment with a gynecologist. I was incredibly lucky this doctor admitted to being unspecialized in endometriosis and referred me to someone with the proper training.
At that stage of my journey, I was unaware of the skills necessary to treat endo. When I went to see this specialist, he immediately suspected endometriosis based on my laundry list of symptoms and an internal pelvic exam. Excision surgery was soon scheduled. Things were moving very quickly, and it was quite scary. Luckily, I had the support of my family and boyfriend, who helped me through.
Did you know what endometriosis was when you were diagnosed?
I went into my first surgery relatively unaware about endometriosis. I did a bit of reading, but that was about it. I didn’t know anyone with endo, so I was very much on my own.
After years of being told that there were no irregularities on my scans and blood work, I was actually incredibly surprised when my surgeon told me I had very deep and extensive endo all throughout my pelvic cavity and bowels. In a strange way it was a relief — I finally felt validated!
What scared you most about the diagnosis?
I was scared the surgery wouldn’t help my pain. And while it did help my debilitating period pain — I am talking as painful as the time I broke my arm — it did not help my chronic pain. This was when I started researching more about endometriosis, and the second diagnosis I was also given at the time of surgery: adenomyosis.
While endometriosis is when tissue similar to the lining of the uterus is found outside of the uterus, adenomyosis is when endometrial tissue perforates the uterus muscle. Both cause internal bleeding and pain.
What do you think are the three biggest misconceptions about endometriosis? Speak your truth!
Myth #1: That all surgical techniques are created equal.
I can’t tell you how many times a day I explain to people who have been misinformed by the internet, or even their healthcare providers, that there is more than one surgical technique. Excision surgery with an endometriosis specialist is the gold standard for effectively treating endometriosis. Most surgeons perform a less successful technique, ablation, that simply burns away the top of the disease, leaving the root behind.
Myth #2: That a hysterectomy will cure endometriosis.
Unfortunately, women are still being advised to have their reproductive organs entirely removed to treat endometriosis. Since endo is located outside the uterus, this doesn’t even make sense. Hysterectomy will only help a uterine condition such as adenomyosis.
Myth #3: That the pill is an effective way to treat endometriosis.
Though hormonal treatments are highly regarded as an acceptable treatment for the disease itself, in actuality, it only masks the symptoms. Oftentimes, the disease continues to grow, however the host is unaware because she cannot feel the symptoms any longer.
This sounds great — however, most women get to a point where the hormones are no longer effective because the disease has progressed so much. Early surgical intervention could help prevent this, and has shown to lead to decreased pain and improved chances of fertility later in life.
What are three things you’ve learned about yourself and your body while living with endometriosis?
I learned not to let the disease define me. Even though I may not be able to do all of the things I used to, I can still add value to people’s lives — whether that be my friends, my family, or the larger community of women online. I can still achieve great things from my sofa in my pj’s.
I learned that I wanted a family and would fight to protect my uterus until I was given that chance. After a bit of trial and error, I am now seven months pregnant with a baby boy! It is funny how challenging situations can bring clarity on what you want for yourself.
I learned that I am incredibly stubborn! I was so disappointed with the inadequacy of care women with endometriosis receive — waiting an average seven years of pain and suffering before they finally receive a diagnosis, receiving ineffective surgeries, being prescribed drugs that only mask the symptoms and create dangerous side effects. I will stop at nothing to change the status quo when it comes to endometriosis care. It is just not good enough!
What advice would you give to someone on how to handle endometriosis flare-ups?
I wouldn’t have been able to survive without my heating pad. I have so many heating devices now to help bring relief to cramping muscles! I also love an Epsom salt bath.
I would also say: Be gentle with yourself. Your body is going through so much right now. Give yourself permission to curl up with your heat pack and watch Netflix.
What final message would you like to tell any of our readers dealing with an endometriosis diagnosis?
There are always options. Never stop fighting for answers. Research, research, research, and empower yourself.