From diagnosis delays to treatment options, find straightforward answers to the questions you have about endometriosis.
From diagnosis delays to treatment options, find straightforward answers to the questions you have about endometriosis.
Endometriosis is a systemic, inflammatory condition characterized by tissue similar to the lining of the uterus growing in other parts of the body. Endometriosis has been found in every organ. It is not simply a menstrual disease, yet is often mischaracterized as such, even by reputable sources.
Endometriosis affects approximately 1 in 10 people born with female reproductive organs. Common symptoms include, but are not limited to, pelvic pain any time during the month, a wide range of GI symptoms, urinary symptoms, fatigue, debilitating periods and more depending on where the endometriosis lesions are located in the body.
Symptoms often start early in life, but due to cultural taboos, misinformation and a historical lack of emphasis in medical education, they may be ignored or misdiagnosed by caregivers, healthcare consumers and practitioners alike. The average diagnostic delay is 7-10 years.
Endometriosis symptoms may begin as early as when puberty starts. Endometriosis symptoms can present before menstruation, during menstruation, and/or after menstruation. An estimated 70% of teens with chronic pelvic pain go on to be later diagnosed with endometriosis.
Red flag: If you or your patient regularly feels pain during or around periods, and this pain is bad enough to interfere with usual activities, this is a red flag - it is not normal and should be investigated further as soon as possible. (If you do not have this, it doesn't mean that you don't have endometriosis).
Risk factors for endometriosis include a mother or sister having the disease (7x increased risk), early onset of menses, short or frequent menstrual cycles, Mullerian abnormalities, autoimmune conditions and more. However, many people develop endo who have none of these risk factors.
Hysterectomy is not a cure for endometriosis. A disease characterized by tissue found outside of the uterus is not cured by removal of the uterus, ovaries and/or tubes and cervix. Over 100,000 hysterectomies are performed each year in the United States for endometriosis and most of them are unnecessary. Neither is pregnancy a cure for endometriosis.
People with endometriosis need an individualized, multi-disciplinary treatment plan that may include specialized, incredibly difficult surgery. Most gynecologists are not trained in advanced endometriosis cases. Drug therapy may suppress symptoms, yet it does not eradicate endometriosis. Patients should be referred to an endometriosis specialist.
People with endometriosis have an increased risk of co-morbidities including allergies, asthma, and chemical sensitivities, autoimmune diseases such as multiple sclerosis and lupus, chronic fatigue syndrome and fibromyalgia, and certain cancers, such as ovarian and breast cancer.
Endometriosis often reduces quality of life and contributes to psychological distress. Unnecessary delays in diagnosis and gaslighting contribute to the negative mental health impacts of the disease. A holistic approach to care including mental health support can improve quality of life.
Endometriosis is a systemic, inflammatory condition characterized by tissue similar to the lining of the uterus growing in other parts of the body. Endometriosis has been found in every organ. It is not simply a menstrual disease, yet is often mischaracterized as such, even by reputable sources.
Endometriosis affects approximately 1 in 10 people born with female reproductive organs. Common symptoms include, but are not limited to, pelvic pain any time during the month, a wide range of GI symptoms, urinary symptoms, fatigue, debilitating periods and more depending on where the endometriosis lesions are located in the body.
Symptoms often start early in life, but due to cultural taboos, misinformation and a historical lack of emphasis in medical education, they may be ignored or misdiagnosed by caregivers, healthcare consumers and practitioners alike. The average diagnostic delay is 7-10 years.
Endometriosis symptoms may begin as early as when puberty starts. Endometriosis symptoms can present before menstruation, during menstruation, and/or after menstruation. An estimated 70% of teens with chronic pelvic pain go on to be later diagnosed with endometriosis.
Red flag: If you or your patient regularly feels pain during or around periods, and this pain is bad enough to interfere with usual activities, this is a red flag - it is not normal and should be investigated further as soon as possible. (If you do not have this, it doesn't mean that you don't have endometriosis).
Risk factors for endometriosis include a mother or sister having the disease (7x increased risk), early onset of menses, short or frequent menstrual cycles, Mullerian abnormalities, autoimmune conditions and more. However, many people develop endo who have none of these risk factors.
Hysterectomy is not a cure for endometriosis. A disease characterized by tissue found outside of the uterus is not cured by removal of the uterus, ovaries and/or tubes and cervix. Over 100,000 hysterectomies are performed each year in the United States for endometriosis and most of them are unnecessary. Neither is pregnancy a cure for endometriosis.
People with endometriosis need an individualized, multi-disciplinary treatment plan that may include specialized, incredibly difficult surgery. Most gynecologists are not trained in advanced endometriosis cases. Drug therapy may suppress symptoms, yet it does not eradicate endometriosis. Patients should be referred to an endometriosis specialist.
People with endometriosis have an increased risk of co-morbidities including allergies, asthma, and chemical sensitivities, autoimmune diseases such as multiple sclerosis and lupus, chronic fatigue syndrome and fibromyalgia, and certain cancers, such as ovarian and breast cancer.
Endometriosis often reduces quality of life and contributes to psychological distress. Unnecessary delays in diagnosis and gaslighting contribute to the negative mental health impacts of the disease. A holistic approach to care including mental health support can improve quality of life.
I want to start by saying: this post is not political. This post is about our shared experiences as women—as a mother of three daughters, a grandmother, and a friend to countless women who have been frustrated and overwhelmed by the current state of our medical system.
We have a common experience—and it needs to be heard and shared.
I was encouraged to write this after reading that the Gates Foundation just pledged $2.5 billion toward women’s health initiatives. But reading the accompanying article published in STAT left me deeply frustrated. The statistics on women’s health haven’t improved enough.
“The Gates Foundation said the goal of the new initiative is to address a long-running deficit in medicine that has disfavored women’s health—to the extent that the ‘typical’ patient described to medical students has traditionally been male.”
— STAT News
In a BMJ article published last week, Ru Cheng, the foundation’s Director of Women’s Health Initiatives, shared that only 1% of global research and development funding is allocated to women’s health issues outside of oncology, and between 2013 and 2023, only 8.8% of NIH-funded research focused exclusively on women.
These are not opinions. These are widely reported, peer-reviewed statistics from respected medical journals. And this is why women with Endometriosis or Adenomyosis are subjected to 8-10 years of medical gaslighting before they are diagnosed. And this is why women with these diseases literally need to be cut open in order to diagnose their disease. It's just not acceptable that laparoscopic surgery is required for diagnosis in 2025. We should be much further along by now. Do you realize that most endometriosis lesions cannot be detected on scans or imaging? I know this can be figured out! Progress is being made, let's push it along.
Men’s and women’s health issues are not treated with the same urgency or investment. That’s not a radical feminist opinion or a political talking point—it’s a follow-the-dollars reality.
The gaslighting women experience around this issue doesn’t just come from doctors. I’ve had people close to me—both men and women—try to argue that women’s health isn’t being overlooked, that maybe we’re exaggerating. But the data is undeniable.
If our mothers, daughters, grandmothers, aunts, and female friends matter—if we believe them and value their lives—then it’s time to stop dismissing their pain. It’s time to pay attention to the statistics, follow the funding, and change our course.
That’s why we launched Our Daughters Foundation:
To fight for awareness, raise money for research, and provide visibility and hope.
When we first started on this path of setting up the foundation, I was shocked to learn that women weren’t even included in NIH-funded medical trials until 1993. That wasn’t so long ago. If you’re close to my age, that year probably feels recent (Jurassic Park was in theaters and Bill Clinton was president). Incredibly, only 1% of non-cancer healthcare R&D currently targets female-specific conditions.
The Gates initiative is a huge step—but it’s not enough.
Women are still underrepresented in studies involving pain management, cardiovascular disease, and autoimmune conditions—fields where female biology plays a huge role in how we experience disease and respond to treatment. Even more disturbing is the lack of research funding for diseases that exclusively affect women, like endometriosis, adenomyosis, PCOS, and uterine fibroids. These are not rare diseases and conditions, and for many women, they’re life-altering.
I hope you’ll join us in raising awareness about the women’s health conditions that affect the people we love—and the people you love. These women are not statistics. They’re not being “dramatic” or “too emotional.” They are Mom, Nana, Auntie, Daughter, Friend.
As always, I’ve included data and references for everything I’ve shared above. (Again—thank you, ChatGPT, for helping curate these.) Please see the resources and stats below, which paint a clear picture of the disparities we’re up against.
— There is so much more to say, & even more that we can DO! Please help us make some noise!
With gratitude,
Kara
A Quick History Review
Thanks to ChatGPT research, here’s a timeline that puts things in perspective:1977 – The FDA banned women of childbearing age from participating in early drug trials. The reason? Hormonal “complexity” and fear of pregnancy-related liability (like the thalidomide crisis). That meant chemotherapy, heart meds, pain relief—all tested mostly on men.
1986–1987: The NIH began encouraging researchers to include women in funded studies. This was first published in the NIH Guide for Grants and Contracts
1993 – The NIH Revitalization Act required federally funded trials to finally include women and analyze sex-based differences.
The Pain Gap
Women experience chronic pain more frequently than men, but they’re still less likely to be treated seriously. A 2020 study of over 200,000 patients found:
Women consistently face longer delays and lower diagnostic accuracy than men—even for the same symptoms.
Women are:
Less likely to receive pain medication in the ER
Made to wait an average of 16 minutes longer
More likely to be told their symptoms are “psychological”
Despite the fact that 70% of chronic pain patients are women, 80% of pain research is still done on male animals or male subjects.
Let that sink in.
Sources
Reuters – Gates Foundation’s $2.5B women’s health initiative
STAT News: Women’s health funding still ignored
FDA 1977 guidance
NIH Revitalization Act
Medidata: History of women in clinical trials
NIH: Endometriosis Funding Summary
SELF: The PCOS Medical Mystery
New Security Beat: VC funding comparison
Statista: Hair Loss Pharma Market
RAND + WHAM Study on Economic Return
NIH: Gender Bias in ER Pain Treatment
Scientific American: Sex Bias in Pain Research
Your support can transform lives. Every donation helps us fund research, advocate for better care, and provide essential grants to women facing debilitating conditions.
Your support can transform lives. Every donation helps us fund research, advocate for better care, and provide essential grants to women facing debilitating conditions.