Endometriosis is a painful condition that many women struggle with but very few actually know about. According to studies, the condition affects 1 in 10 girls and women; approximately 176,000,000 people on the planet. Despite its prevalence, women reportedly see an average of 8 doctors for 10 years before diagnosis — all the while missing out on moments in life because of painful symptoms.
Recently, more women are speaking up about their experiences with endometriosis and shedding light on the often misunderstood disease. One woman, Katie Bormaster, is sharing her very personal holistic journey dealing with endo. We asked her to share her first-hand experience from diagnosis to recovery and all the helpful details in between. Read Katie’s insightful story and then check out her upcoming endo support event at the end of this story…
My name is Katie. This is my story. I am a woman fighting a fierce battle with an invisible disease. I came to know the complex nature of this illness intimately over the past ten years. I have first-hand experience on how to cope with it and manage it.
It is called endometriosis. Maybe you’ve heard of it. Maybe you haven’t. Since it impacts 1 in 10 women, chances are you know someone who has it or someone who might not yet have been diagnosed.
It is a word that is riddled with myths. It is misunderstood, misdiagnosed — and mistreated by most general OBGYN’s. For me, it is a word that is associated with excruciating pain, chronic fatigue, nausea, vomiting, debilitating lower back pain, acute brain fog and severe bloating. It made me look 7 months pregnant and that symptom baffled my doctors. Because for them, the bloating was the only symptom they could see. If they couldn’t see it, they discounted it.
I first developed these symptoms almost a decade ago and my quality of life, as I knew it changed drastically. I saw many doctors over the course of those years. I had reported all of those issues– but most physicians never validated my symptoms nor connected them to each other. Only one doctor suggested that I might have endometriosis, but he didn’t perceive it to be an imminent threat. It was.
There is an estimated 7-10 year delay from symptom onset to diagnosis with endometriosis. For me, it took six years. My pain became unbearable and the bloating was overwhelming. It wasn’t uncommon to get asked how far along I was in my pregnancy, even though I wasn’t pregnant. My doctor finally ordered a pelvic ultrasound that led to a recommendation of laparoscopic surgery to remove ovarian cysts that were present. After the pathology came back, I was finally diagnosed with endometriosis. It is important to note that endometriosis cannot be seen on or confirmed by imaging. The only definitive way to diagnose it is with laparoscopic surgery with confirmed pathology.
Three years after my first surgery, I found that many of my symptoms had returned including the cysts. I was devastated. Vigorous research turned into a source of hope. I read about and screened the groundbreaking documentary, “Endo What?” by Shannon Cohn. I was totally inspired and informed by the film. For the first time, I didn’t feel alone. Featured in the film was Dr. Iris Kerin Orbuch, a specialist in endometriosis who would later become my surgeon.
After consulting with Dr. Orbuch, I was finally validated. I learned first hand about the facts and myths of the disease and what I could do about it. I understood that all of my issues were linked and that the endometriosis may not be limited to my ovaries as I had once thought. It can be found in many other places such as the bladder or the appendix — even the bowel, causing a whole range of symptoms. Dr. Orbuch informed me that I would need to undergo a 2nd surgery to remove the new ovarian cysts. Her treatment was different from the general OBGYN’s I had seen. She incorporated an entire mind-body, east meets west approach, with excision surgery as the cornerstone of treatment. I felt empowered.
Dr. Orbuch specializes in excision surgery – which she performed on me. Excision surgery excises or cuts the endometriosis to remove it completely and must be performed by a highly skilled surgeon. Data shows that this technique provides the best symptomatic relief and long-term outcomes. On the other hand, ablation surgery, the most common technique performed by generalists, only treats the superficial disease and can leave endometriosis behind. This can lead to pain and repeat surgeries. The distinction between these two techniques would be the single most significant piece of information I would find on my journey to fight endometriosis.
All of the endometriosis lesions were excised, many found outside of my ovaries. It’s been almost 6 months since my surgery. No more bloating, no more pain, no more chronic fatigue or brain fog. For the first time in ten years, I have my life back. In association with Dr. Orbuch and her team of experts, I followed a protocol that has been successful for me. While there is no cure for endometriosis, I have achieved a state of wellness I never thought possible while living with a chronic illness.
Lifestyle Changes To Combat Endometriosis
Many of the following lifestyle changes have been incorporated into my treatment plan and are from the book Beating Endo: How to Reclaim Your Life From Endometriosis co-authored by my endometriosis specialist Dr. Iris Kerin Orbuch, MD and Amy Stein, DPT.
FIND AN ENDOMETRIOSIS SPECIALIST | If you think you might have endometriosis or you’ve already been diagnosed, the most effective way to get proper treatment is to see an endometriosis specialist who will be highly trained in identifying your symptoms and can work with you to create an individualized plan. If it is determined that you need surgery, it is important to note that there are only 100 skilled excision specialists in the US. A trusted and recommended list of specialists can be found on Facebook in the group, Nancy’s Nook Endometriosis Education.
INCORPORATE AN ANTI-INFLAMMATORY DIET |Dr. Orbuch recommended Jessica Drummond MPT, CCN, CHC, Founder and CEO of the Integrative Women’s Health Institute to help customize my diet plan. Because endometriosis is a chronic systemic inflammatory disease, keeping inflammation at bay is key. If it’s in a bag or a box, I don’t eat it. I try to stay 100 percent organic with a focus on simple fresh food with minimal ingredients. Dr. Drummond explained that lots of cruciferous vegetables daily can help reduce estrogen naturally. I removed gluten, dairy, soy, caffeine, refined sugar and all processed foods from my diet. In concert with my surgery, I saw my endometriosis symptoms drastically improve—almost immediately. It was life-changing.
On the anti-inflammatory diet, I eat mostly lean proteins, wild fish, eggs, vegetables and berries with limited grains and nuts. Throughout the day I drink herbal tea and lots of filtered (Erewhon!) water. If I want something sweet, I head to Sweet Laurel Bakery in the Palisades.
CREATE A GREEN BEAUTY REGIMEN | After reading the book Beating Endo I overhauled my beauty routine. I learned that what I put on my body is just as important in managing my endometriosis as what I put in my body. It’s imperative to reduce exposure to potentially toxic products. We know that these certain ingredients can act as endocrine disruptors tricking the body to mimic estrogen, interfering with hormones. Beating Endo explains how this can be particularly concerning for women who suffer from endometriosis. I use Agent Nateur products almost exclusively; the founder developed the products due to her own personal struggle with endometriosis.
COMMIT TO PELVIC FLOOR PHYSICAL THERAPY | Find a physical therapist that specializes in pelvic floor physical therapy that has a deep understanding of the complex facets of endometriosis and the impact it can have on the overall body. Because I spent ten years tightening my pelvic floor muscles due to painful cramps — it was highly recommended by Dr. Orbuch as an essential part of my treatment plan. I worked with Casie Danenhauer, DPT, of Enlighten Physical Therapy, who was instrumental in preparing my body leading up to surgery and in the recovery during the months following.
GET TESTED FOR SIBO | If you have a distended abdomen or “endo belly” that will not go away make sure to get tested for small intestinal bacterial overgrowth. I learned after many years of living with what I just thought was “endo belly” that many women with endometriosis also suffer from SIBO, which can cause extreme bloating. I met with Dr. Mao Shing Ni, a highly regarded doctor of acupuncture and Chinese medicine and co-founder of the Tao of Wellness, after seeing him in the Documentary “Endo What?” Under his guidance, I followed a 6-month specific protocol of a low FODMAP diet (low fermentable carbs) along with acupuncture and Chinese herbs. Within weeks my bloating significantly subsided with zero relapses.
INTEGRATE A SELF-CARE ROUTINE | As a part of my treatment plan, I integrated a multimodal approach to help manage my endometriosis. Yoga, acupuncture, meditation and infrared sauna have all been crucial in my personal journey towards recovery. I’ve also had great success with Juna Nude Hemp CBD drops for pain. These practices in combination with the other lifestyle changes above have elevated, uplifted and renewed my life.
If you would like more information about living with endometriosis, you are invited to join Katie Bormaster for ENDO INFO DAY LA on Sunday, August 25TH at 3:00 pm at WeWork in West Hollywood. Please join us for an exclusive screening of Endo What? followed by an endometriosis and pelvic heath expert panel discussion, moderated by director/producer, Shannon Cohn. Learn More