The Truth About Endometriosis
What Every Woman Deserves to Know
In honor of Endometriosis Awareness Month, hormone coach and RoseFem reader Christa “CJ” Johnston shares her personal journey with endometriosis—along with essential insights every woman should know about this often-misunderstood condition.
I Have a Confession to Make…
As a hormone coach, I sometimes struggle with imposter syndrome, questioning whether I truly know enough to guide women on their hormone health journeys.
But every time I hear a woman share her confusion and frustration with today’s healthcare system, something inside me stirs—a fierce desire to speak truth and clarity into the rampant misinformation, especially when it comes to endometriosis.
The Backstory
March is Endometriosis Awareness Month—something I never paid much attention to until almost three years ago. When I did think about the condition, it was with a sense of relief that I didn’t have it. After all, I didn’t suffer from painful cramps, heavy periods, or pain with sex. Little did I know, I would end up with a diagnosis just over a year into my marriage.
Looking back, it’s easy to see that, although I didn’t have the three most commonly recognized symptoms, I had numerous others. I experienced debilitating fatigue that made it difficult to get out of bed and get to work on time. I felt like I was in a fog until around 10:30 AM, despite having been awake for hours. I had food sensitivities, IBS symptoms that flared up during specific parts of my cycle, tailbone pain during my period, mild burning pain in my lower back and hips, pinching pain in my pelvis throughout my cycle, and I would occasionally develop large cysts called Luteinized Unruptured Follicles (LUFs), which caused severe pelvic pain and rectal pressure.
Aptly dubbed “butt lightning” by the online endo community, my least favorite symptom involved random, sudden jolts of nerve pain shooting up the rectum.
On paper, it seems so obviously miserable, but in reality, it was my normal. I didn’t realize that all of my small aches and pains added up to quite a bit of pelvic pain. My doctor said my ovaries were “just doing their thing.”
What is Endometriosis?
Endometriosis (or “endo,” for short) affects more than 6 million American women and approximately 10% of women worldwide1. It occurs when endometrial-like tissue grows outside the uterus.
Like the uterine lining, endo lesions build up, break down, and bleed throughout the cycle — but unlike a period, where the lining exits the body, these lesions have no escape. The result? Chronic inflammation, pain, and potential organ damage —affecting the ovaries, bowels, fallopian tubes, and even, in rare cases, the brain.
Endo isn’t just a reproductive disease —it’s a whole-body condition. It can spread like cancer, trigger autoimmune-like symptoms, and severely impact fertility by damaging egg quality and ovarian function. Doctors classify endometriosis into four stages (from minimal [stage 1] to severe [stage 4]), but stage doesn’t always predict pain levels or severity of symptoms.
Shockingly, an estimated 70% of teenage girls who experience severe period pain are later diagnosed with endometriosis2. Yet, many go undiagnosed for years, enduring unnecessary suffering.
Why Does It Take So Long to Diagnose?
On average, it takes 8–12 years for a woman to receive an endometriosis diagnosis3. Why? Because symptoms vary widely and often seem unrelated. Would you ever connect food sensitivities or fatigue to a gynecological condition? I didn’t.
Women are often told that painful periods are "normal", causing them to dismiss their own symptoms. Even doctors can overlook the bigger picture, failing to recognize endo as a full-body disease.
But the delay in diagnosis is also a symptom of something bigger: a healthcare system that’s failing women. Many women are told that birth control is their only option. While hormonal suppression can ease pain, it doesn’t treat the disease or stop it from spreading. It just hides it.
And here’s the kicker: the only way to properly diagnose endo is through laparoscopic surgery performed by a true expert. That’s where many women are misled.
The Misconceptions
A friend of mine was assured by her doctors that she didn’t have endo, despite her debilitatingly painful periods. They told her they had “checked” and it wasn’t there. As with many other women, she was offered an IUD as a band-aid.
The problem? She never had diagnostic surgery. Ultrasounds and MRIs only detect advanced stages. My endo was stage 2—there was no evidence of it on imaging. The only proper diagnosis is through a surgeon excising and biopsying the tissue.
Another woman I know was told her doctor wouldn’t treat her suspected endo, because it was likely only stage 1 or 2. Yet they could not know that she had endometriosis, let alone the stage of disease, without surgery.
Symptom severity does not correlate with disease severity. I know women with stage 1 endo who are bedridden and others with stage 4 who ‘only’ struggled with infertility.
One of the most harmful misconceptions is that a hysterectomy cures endometriosis. Sadly, doctors may opt for organ removal over proper treatment. Since endo is endometrial-like tissue found outside the uterus, removing the uterus may not do anything if the lesions remain.
My heart was broken to learn of a 21-year-old woman who had a hysterectomy because she was desperate for pain relief. Since her surgeons left all the endometriosis lesions in her body, she was left with the same level of pain and stripped of the possibility of ever having her own biological children.
Why Surgical Expertise Matters
The level of training in endometriosis surgery varies greatly among OB/GYNs. Not everyone who claims to be an expert in endometriosis actually is.
Many OB/GYNs offer ablation—burning the lesions—rather than excision, which removes them completely. The problem? Ablation is like melting the tip of an iceberg. The disease roots remain, growing silently until the pain returns. Worse, burning tissues can create scar tissue, causing even more pain. The recurrence rate for ablation surgeries is 40-60% within just 1-2 years4. Yet, this is still considered the standard of care today.
Excision surgery, on the other hand, is the gold standard. It removes the disease from the root, and when combined with proper adhesion prevention, repeat surgeries are rare. One recent study led by Dr. Patrick Yeung Jr. found that the recurrence rate for expert excision was just 2.5% over 10 years5*. The surgeon I worked with has had similar outcomes. That’s the difference real expertise makes!
Where Do We Go From Here?
If you suspect you might have endometriosis, don’t lose hope. There are providers who will listen and offer the care you deserve. Hormone coaches, like myself and Leanne, can help you prepare for appointments, advocate for yourself, and explore natural ways to manage symptoms.
You deserve to be heard. You deserve real answers. And most importantly, you deserve to feel whole—because you were designed with dignity.
Helpful Resources
RRM Academy (Dr. Naomi Whittaker): Free 3-Tier Endometriosis Self-Symptom Survey
Instagram: @napro_fertility_surgeon
St. Paul VI Institute (Omaha, NE)
FABMbase Podcast: Episode on Pelvioplasty
Nancy’s Nook Facebook Groups
The Hormone Genius Podcast:
Season 1, Episode 23: All About Endometriosis, Q&A with Teresa
Season 5, Episode 11: Christa’s Story
About CJ
By day, she teaches English to multilingual elementary school students. Her personal experiences ignited her passion for women’s health care, and she is now also a certified hormone coach through the Fiat Institute. She is honored to serve other women by listening to and empowering her clients with knowledge about the beauty and dignity of the female body, as well as providing natural tools to help support their hormone health journeys. You can get in touch with CJ at info@dignityempowered.com.
“Endometriosis,” U.S. Department of Health and Human Services, Office of Women’s Health, last updated February 22, 2021,https://womenshealth.gov/a-z-topics/endometriosis
Robert N. Taylor, Lone Hummelshoj, Pamela Stratton, and Paolo Vercellini, “Pain and Endometriosis: Etiology, Impact, and Therapeutics,” Middle East Fertility Society Journal 17, no. 4 (2012):221–25, https://doi.org/10.1016/j.mefs.2012.09.002
Zoë Pugsley and Karen Ballard, “Management of Endometriosis in General Practice: The Pathway to Diagnosis,” British Journal of General Practice 57, no. 539 (2007): 470–76, https://pmc.ncbi.nlm.nih.gov/articles/PMC2078174/.
Yeung, P., Mohan, A., & Gavard, J. “The Long-term Rate of Repeat Surgery After Optimal Excision Surgery of Endometriosis at a Single Tertiary Referral Center.” Preprints.(2024) https://doi.org/10.20944/preprints202409.1485.v1
Yeung, P., Mohan, A., & Gavard, J. “The Long-term Rate of Repeat Surgery After Optimal Excision Surgery of Endometriosis at a Single Tertiary Referral Center.” Preprints.(2024) https://doi.org/10.20944/preprints202409.1485.v1. *Pre-print study that has not yet been peer reviewed.