Dr. Merritt’s Endo Story: Living and Thriving with Endometriosis
This blog post is a personal one for me. I don’t make a habit of using my practice to talk about my own health, but this month I am feeling inspired to share. March is endometriosis awareness month. As doctor of acupuncture and integrative medicine both living with and specializing in endometriosis and natural reproductive health, I’ve had a lot of time to think about this subject.
I used to suffer greatly. Some months, I still do, but most of the time, I am ok. Most of the time, I’d go so far as to say I feel great. After many years of trial and error, of passing out in airport bathrooms, missing job interviews and many other important and not-so-important life events, I have figured out how to manage my endo. Below is my story – thanks for listening.
I remember so clearly my first “episode,” as I’ve come to call them, when my uterus felt like it was being crushed by an elephant. I was 13, and had been sent home from school with “menstrual cramps.” I remember the look of shock and concern on my mothers face when she picked me up. I was doubled over in pain, barely able to walk. I vomited in the car and then passed out on the way home. It was pain like I’d never experienced before. I was terrified and miserable. My mom called the pediatrician, who said it was just bad menstrual cramps – take some ibuprofen and go to bed.
At the time, I recall feeling incredibly isolated and confused. None of my friends had menstrual pain like this, and my doctors had no answers for me. Of course I realize now that stories like this are all too common. Unfortunately most doctors aren’t well trained in recognizing the signs and symptoms of endometriosis, so young girls and women can go on suffering for many years before they get answers, with the average diagnosis for women being 7-10 years after onset of symptoms.
These episodes became worse and more frequent as I grew older. I have more stories about awful endo-episodes that I care to count. For so long, I lived in fear about when one might next strike. They’ve occurred on the way to job interviews, in airplanes, on first dates. One of the most traumatic episodes I can recall was the time I was alone in the house and I passed out from pain while in the restroom. I hit my head on the wall, woke up on the floor, nauseated and unable to stand. I had to crawl to the phone in the living room to call for help. It was terrifying and humiliating. It was another 4 years of pain like this before a diagnosis.
After almost 15 years of chronic pain, I ended up diagnosing myself with endometriosis midway through graduate school. I went to my doctor, told her what I thought was wrong with me, and she ordered an ultrasound. Sure enough, there was a 12 cm endometrioma on my ovary. She called for immediate surgery, which I had less than weeks later. After surgery she told me that I had the most advanced stage of endometriosis, stage 4, that there was severe scaring in my pelvis, and that my fertility was significantly impaired. I was devastated, but also relieved in a backwards sort of way. At least I finally had answers – I wasn’t crazy after all.
After surgery, I decided that I needed to learn as much as I could about this disease. Since then, I’ve build an integrative practice around reproductive health, and have made it my mission to help other women receive better care. People with endometriosis deserve better.
What I’ve Learned
I’ve had many occasions of pain since my first surgery, but none nearly as bad as I used to experience. There are still days that I wish I didn’t have to get out of bed, but most of the time I can.
Over the years I’ve experimented with a myriad of endo-management tools, ranging from diet and lifestyle, immune support, acupuncture and Chinese medicine, naturopathic medicine, laparoscopic surgery, Western pain management and hormonal contraception. I’ve learned that with this disease, a “village” approach is often best, and having an awesome support team makes all the difference.
After a lot of trial and error, I have learned that the best way for me to keep my endo-pain in check is a combination of an auto-immune diet, regular exercise, acupuncture, herbal medicine and strategic supplementation to support the various phases of my cycle. It does require some planning, but the relief I feel is worth it.
Even though I’ve figured out what I need to feel best most days, honesty, I’m not perfect. Some days, I just cant take another supplement. Once in a while, I just have to have pizza for dinner or enjoy a fancy craft cocktail, and that’s ok. Do I pay the price with increased endo pain? Sometimes. But I’ve learned over the years that being too dogmatic about pretty much anything is not sustainable and doesn’t serve my highest and best good. In all things, there must be balance and flexibility.
One piece of this disease that I’ve learned is so important to address is emotional health. For so long, the level of severe pain, chronic fatigue, stress and anxiety were my normal. Most people just couldn’t relate to what I was going through, and so I kept it inside, bottled up. It’s taken years of retraining my emotional brain to acknowledge that the struggles that come with this disease are NOT normal, they are complex and sometimes difficult to navigate, and it’s ok to acknowledge them. It’s ok to ask for help. It’s ok to feel angry or sad or anxious or whatever else comes up along with this disease. This is a daily practice for me, and doesn’t always come easy. Again, for me, it’s about practice, not perfection.
My story is just one of many. There is no once-size-fits-all approach to managing and treating endometriosis, and each woman will have her own story to tell. One of the most beautiful silver linings that has come out of this disease for me is the deep call to serve others dealing with similar struggles. 1 in 10 women are living with endometriosis, and yet it is one of the most underfunded, under diagnosed diseases out there. WE DESERVE BETTER.
When I graduated from the Acupuncture and Integrative Medicine College, I knew that I had to build a reproductive health practice that could be a space for people to feel supported as they face endometriosis. Being able to support others through this incredibly challenging and under recognized disease has provided me with a kind of gratitude I can’t begin to describe. I don’t have all of the answers, but I’ve learned a helluva lot in the past 15 years on how to manage endometriosis naturally, and I genuinely enjoy sharing what I’ve learned and continue to learn. There is hope, and you are not alone in this.
If you have endometriosis, or suspect you have endometriosis: we see you, we hear you, we’re here for you. Your pain is real. You deserve to be heard. You deserve to be helped, and we would love to be a part of your journey.
Thank you for listening to my story. I would love to hear yours.
In better health and wellness,
Dr. Merritt Jones