“I can’t imagine how different the last 10 years would have been if I received the proper surgery and the proper integrated treatment plan for endo when I began first having those symptoms.”
Katie Bormaster finally felt understood. After two decades of pain and heavy periods, and then severe bloating and nausea, someone had an answer – and a promising path forward.
“It was life-changing to hear all that information, and to be validated was huge,” she says. “It was pretty incredible to understand that I was living with a chronic inflammatory disease that was impacting all of these aspects of my life.”
Talking with a new doctor, she now knew that her collection of ailments was all connected to endometriosis, a condition in which endometrial cells are found outside the uterus. It affects a surprising 7 to 15 percent of women – many of which don’t associate their symptoms with endometriosis.
Symptoms can include all of the above, plus organ dysfunction and in some cases, infertility.
It took nearly a decade for Katie to get a diagnosis and confirmation that, yes, all her troubles seemed to lead back to endometriosis.
Debilitating Pain, Fatigue, Nausea
In her teens, Katie often suffered from pain and heavy periods. But other women in her family struggled similarly, leading her to believe it was simply normal.
When the pain became extreme, her mom sent her to a gynecological oncologist to rule out cancer. The doctor suspected endometriosis at the time, but advised Katie she didn’t need to do anything about the condition until she planned to have children.
While that was the first time she heard the word “endometriosis,” it would be nearly a decade before she got the help she needed for it.
Meanwhile, her symptoms snowballed. In her 30s, once-occasional bloating turned frequent and extreme.
“I woke up with a flat stomach and then it would start to grow,” she says. “By the end of the day, I looked seven months pregnant.”
One doctor advised her that the bloat was just belly fat brought on by aging, despite the fact that it seemed to vary vastly throughout the day. She later learned this was “endo belly.”
Soon, back pain, fatigue, brain fog and nausea rounded out the list of debilitating symptoms – at times so bad they sent her to the hospital.
“I kept going to doctors, but nobody connected any of these things,” she says.
Prescription medication helped with pain and nausea. But still, endo impacted every aspect of her life, from her relationships to her work as a TV producer and event producer.
“I’m a very social person and I thrive on community and people, and I love to work and produce,” she says. “Every day, I was just struggling to keep up and I didn’t complain about it. I literally just thought it was normal. I just thought like, ‘Oh, this is what happens to me when I get older.’”
Finally, an Endometriosis Diagnosis
Katie eventually returned to the doctor who had first uttered the word, endometriosis. Scans found a cyst, an endometrioma that needed to come out.
When the doctor went in, the problem was clear. After years of pain and more, at last Katie had an actual endometriosis diagnosis.
Following the surgery, she blissfully enjoyed a pause from the pain and bloating. For about a year, she felt better and returned to a more active life.
But soon, the pain and bloating crept back again.
“The only thing that went away for me were the severe cramps and the crazy bloating,” she says. “And I was so grateful and I was so happy. But I still had chronic fatigue and brain fog. All of that stuff never went away, sort of all of those symptoms that are the root of systemic inflammation.”
A Documentary… Leads to a Doctor
Yet it was a documentary, not a doctor, that finally educated Katie on the real facts about endo. When she watched the film, Endo What? by Shannon Cohn, all the pieces came together.
That her symptoms were probably all related to endo…
That it’s not just pain and bloating…
That one in 10 women have endo…
That most have to see seven to 10 doctors, and spend an average of 10 years, to get a diagnosis.
“I didn’t know I was walking around with a full-body disease,” she says. “It was really the first time that I received accurate information on the disease and really understood how comprehensive it is. I was listening to all the interviews and listening to the doctors and the women. I was just like, ‘Oh my God, that’s me.’”
Realizing she was one of the approximately 176,000 women worldwide with endo changed the game for her.
She immediately reached out to the endo specialist featured in the film, Dr. Iris Orbuch, who happened to be local to Katie. She’s also the author of the book, Beating Endo: How to Reclaim Your Life from Endometriosis.
For the first time, a doctor empathized and understood her symptoms – and connected them all with endo. She also learned that endo was also likely to blame for her lifelong eczema.
Excision Surgery for Endo
Dr. Orbuch recommended immediate surgery, but not the same kind as before. With excision surgery, the doctor would remove all the endo material. Before, the doctor had removed just part of it, like taking off the tip of the iceberg.
If you don’t remove it all, Katie learned, it can grow back. That explained why her symptoms had returned within a year.
This time, post-surgery looked radically different. All her symptoms were better.
“I felt relief really after the surgery and then it was like each month I just got better. Every month I was like, ‘Oh my God, I feel better.’ Yeah, it was really incredible.”
A Treatment Plan for Endometriosis
Along with surgery, Katie embarked on a multi-pronged approach to managing endometriosis.
“There’s no cure for endo,” she says. “My lifestyle is about managing my symptoms and getting a long-term treatment plan.”
Here’s Katie’s treatment plan:
- Excision surgery – Surgery removed all the endo tissue to prevent it from coming back.
- Pelvic-floor therapy – Dr. Orbuch recommended pelvic-floor therapy before and after excision surgery.
- An anti-inflammatory diet – With the help of Dr. Jessica Drummond, founder and CEO of the Integrative Women’s Health Institute, Katie fine-tuned her diet, diversifying after being on a paleo diet. Her diet is vegetable-heavy, and includes meats (except red meat), fruit, nuts, sweet potatoes and whole grains. It doesn’t include gluten, dairy, soy or flax.
“Anti-inflammatory diets are valuable tools to suppress inflammation and improve the autoimmunity associated with endometriosis,” explains Dr. Drummond. “Unfortunately, there’s no simple ‘one-size-fits-all’ endo diet. For each person with endometriosis, we personalize the nutrition plan, taking into consideration sensitivities to histamines or oxalates, for example, and their digestive function.”
She stresses that it’s not just about removing triggers, but also about adding healthy foods.
“Anti-inflammatory foods, herbs and spices such as oregano, rosemary, thyme, fish or fish oil, turmeric, olive oil, and leafy greens (sometimes cooked, only at first) are essential,” she adds.
- Non-toxic household and beauty products – Katie switched to natural cleaning and beauty solutions.
- Self-care – She added self-care and stress management practices such as yoga, breathing and meditation.
- SIBO treatment – Many endo warriors also experience small intestinal bacterial overgrowth, or SIBO, which can contribute to bloating. Instead of the standard protocol for SIBO, antibiotics, Katie turned to Chinese medicine from Dr. Mao Shing Ni, the co-founder of Tao of Wellness. Acupuncture, herbs and the Low FODMAP diet soon cleared the condition.
‘It’s Changed Everything’
A year after surgery, Katie feels better than she has in years.
“The bloating is totally under control and I don’t have any symptoms,” she says. “I have so much energy. The chronic fatigue is gone. The brain fog is totally gone since my surgery. I feel like my old self. It’s changed everything.”
Katie’s now on a mission to educate others and clear up misconceptions (see below) about endometriosis.
“I can’t imagine how different the last 10 years would have been if I received the proper surgery and the proper integrated treatment plan for endo when I began first having those symptoms,” she says.
After a decade of trying to find answers, Katie passes on her hard-won wisdom to other women:
- Find an endo specialist – Look for someone whose practice is dedicated to endo.
- Be your own advocate – Do your own research and don’t rely solely on what doctors are telling you. She recommends the Nancy’s Nook Facebook page and books by Orbuch and Drummond.
“The more we can get accurate information out there and empower others to become educated about their disease, the more they can become their own advocates,” she says.
Misconceptions about Endometriosis
Misconception #1: Symptoms only happen during your period. In fact, they can happen at any time.
Misconception #2: You only need to treat it when/if you’re ready to have children. Endo is painful and debilitating, apart from fertility concerns.
Misconception #3: You can be diagnosed without surgery. Actually, scans or blood tests don’t show definitively. Only laparoscopic surgery with pathology can confirm the presence of endometriosis.
Misconception #4: Ablation surgery can help. Ablation surgery burns the top cells off, but doesn’t remove the root. Excision surgery aims to remove all of the endometriosis cells.
Misconception #5: Endometriosis grows only on ovaries or reproductive areas. In fact, cells can grow far beyond reproductive areas to other organs.
If you enjoyed this story, you might also like: Houston R.N. Takes the Edge off Endometriosis with Diet, Meditation.
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