Diagnosis Delays in Women’s Health: The Denial of Women’s Pain

Adeline Lai
11 min readOct 29, 2023

When was the last time you felt sick? Were you told that you were mentally ill, or attention seeking for saying that you felt sick?

Now let’s say you had a really hard kick to the stomach. The pain was so gutwrenching that you had to go to the emergency room. Would your doctor tell you that the pain is “all in your head”?

Girls and women face this all the time.

3 in 10 middle-aged women with coronary heart disease symptoms are diagnosed with mental illness.

Women with acute abdominal pain have to wait 65 minutes for pain medication, compared to men who typically wait 49 minutes.

This list goes on and on.

Not only does this cause tremendous pain to women, it can even lead to serious diseases being undiagnosed for years. During this period, women are forced to suffer these mental, physical and financial consequences on their own.

On top of this, delayed diagnosis will even increase women’s likelihood of death.

For example, a 6+ weeks delay of endometrial cancer leads to a 14% higher chance of death.

Let’s take a look at endometriosis as an example.

If a woman doesn’t become pregnant, the tissue that lines the uterus is shed during the woman’s period. Women who have endometriosis have this type of tissue growing outside their uterus in places like their fallopian tubes. Like the tissue lining the uterus, the tissue outside the uterus also sheds during a woman’s period. This means that the woman is not only bleeding from her uterus but also from other key reproductive organs like the fallopian tubes, causing immense pain.

The bleeding outside the uterus also triggers the woman’s immune system to attack this misplaced tissue leading to inflammation, digestive issues and more pain.

If endometriosis isn’t treated quickly, the tissue outside the uterus becomes scar tissue. Scar tissue is particularly dangerous because it sticks to other organs. For example, scar tissue in the fallopian tubes can cause the fallopian tubes to stick to nearby organs. This can lead to infertility or life-threatening pregnancies since the fallopian tubes deliver eggs from a woman’s ovaries to the uterus. If the fallopian tubes are blocked, the eggs can’t reach the uterus. If the eggs can’t reach the uterus, the woman can’t conceive.

Sometimes, the egg grows in the fallopian tube and the woman becomes pregnant. This pregnancy will be extremely dangerous because the fallopian tubes aren’t made to be where an egg grows. As the egg becomes bigger, the fallopian tubes may break causing enough internal bleeding to take the woman’s life.

1 in 10 women have endometriosis. However, 9 in 10 women with endometriosis have their symptoms completely ignored by doctors and family members. Almost 1/2 of women with endometriosis have even been told that their symptoms are a “normal part of being a woman”!

The lack of endometriosis diagnosis significantly decreases a woman’s quality of life. Women with endometriosis have a 50% increased risk of developing depression or anxiety. Leaving endometriosis undiagnosed means leaving 190 million women with terrible physical and mental health for many years.

The lack of diagnosis also impacts women financially.

On average, a woman with a delayed endometriosis diagnosis will spend ~$28,376 in healthcare costs.

Women with endometriosis miss many work days and have lower productivity due to their symptoms. This has huge economic and career impacts, leading to 1 in 6 women with endometriosis to be fired.

In the U.K. alone, women’s health conditions take 3+ years from symptom onset to diagnosis.

The main cause behind this ridiculous diagnosis time is that women’s health symptoms are ignored and dismissed. In fact, 1 in 3 women say their health concerns weren’t taken seriously by their healthcare providers. The main issue here is gender bias and the normalization of women’s pain. Throughout history, women’s health symptoms for serious conditions like endometriosis are glossed over as PMS or “part of being a woman”.

Medical gaslighting is when a doctor ignores or gaslights the patient into thinking that their symptoms are caused by their own psychological issues.

In the 21st century, this makes absolutely no sense. Aren’t doctors supposed to make you feel better?

Guess what’s even more absurd?

Women don’t seek medical care.

47% of women see scheduling an appointment as a chore. Since the scheduling of appointments is viewed as a chore, they’re labelled as non-urgent. Approximately, 4 in 5 women don’t seek medical care until their symptoms worsen. Without seeking medical care, women can’t get diagnosed or treated.

Does this mean that women are too lazy to take care of their own health? Why aren’t women setting up appointments?

Women dismiss their own symptoms.

More than 1 in 5 women who had heart attacks thought that their symptoms were simply stress or anxiety. During heart attacks, most women wait more than 90 minutes before calling 911! Half of the women with heart attacks even called a friend or family about their symptoms before calling 911.

The root of this issue is that women are afraid to be seen as problematic or hysterical.

As many as 13% of young women and girls don’t seek medical care for their period symptoms because they’re told that they’re overreacting. Through external gender bias that women experience, women have begun to internalize these biases themselves.

Women know nothing about their own health.

They dismiss their symptoms because they don’t know that it’s important. 94% of women lack basic knowledge of common women’s health issues, including knowledge about their bodies and the major health risks they face. 25% of women can’t even identify the vagina or define “menstruation”!

Without this knowledge, women don’t know that they have symptoms of severe conditions.

More than half of women also believe that this is a major roadblock to advocating for their symptoms at the doctor’s office.

Women’s health isn’t taught in school.

Curriculums for elementary, secondary and even medical schools include minimal women’s health education. Due to the inadequate education in women’s health, women and doctors are likely to dismiss women’s health symptoms.

Teachers are also uncomfortable discussing women’s health-related topics, causing some of them to avoid the topic altogether. In Australia, over 34% of female teachers and 83% of male teachers didn’t feel confident addressing the topic of menstruation.

This lack of confidence originates from inadequate training in teaching women’s health topics. In the U.K., 80% of teachers agreed that giving teachers more training would improve menstrual health education in schools.

Without teaching about women’s health, women are left in the dark about their health, the conditions they have and even potentially, their increasing rate of death.

Even if women are knowledgeable about women’s health, it’s hard for them to stand up against doctors dismissing their symptoms.

Assume that the education problem was fixed, curriculums were implemented and teachers were better trained. Long diagnosis delays would still be an issue. At the end of the day, women don’t have enough time to advocate for themselves.

Usually, appointments only last for 13–20 minutes. But 1 in 5 doctors have even shorter appointment times! These appointment times are so insufficient that more than 1/3 of women felt rushed and couldn’t even ask all their questions. If women don’t even have enough time to finish asking questions, they probably don’t have time to advocate for their symptoms to not be ignored.

Not only do short appointment times lead to symptom dismissal, but they also drastically increase misdiagnoses. Due to the short appointments, 4 in 5 doctors said they don’t always have time to properly diagnose patients. 94% of doctors even admitted that patients are at risk because of short appointments. With such short appointments, doctors may misdiagnose or completely miss serious health issues.

Ultimately, the short appointment times are caused by overbooking. Overbooking is a standard practice where doctors decrease appointment length to increase the number of appointments a doctor can have. This system reduces the impact of people not showing up but damages the quality of care given to patients. As a result, prioritizing quantity over quality. This system must be changed to prioritize quality without compromising the quantity of appointments.

There are 2 issues that we must solve so that women’s pain won’t be ignored.

1. The lack of women’s health in school curriculums

2. Overbooking in medical systems

The lack of women’s health in school curriculums

The lack of women’s health topics in curriculums would need to be solved by advocating to the government for change. Then, the government would need time to create a new curriculum. Later, this curriculum must be implemented and scaled to multiple schools. However, this process will be extremely difficult and time-consuming.

In the University of Saskatchewan alone, the process of implementing a new curriculum takes 4 to 6 months for smaller changes and 1.5 to 5 years for larger changes. This duration will only be longer for curriculum implementation across all schools in all school boards.

In particular, women’s health curriculums are even more difficult to implement since there’s disagreement and confusion surrounding what women’s health includes. Universities also face many conflicts surrounding lecture scheduling, reimbursements and departments collaborating, which is required for women’s health lectures to be included in programs. The women’s health field also has a low number of specialists, making it difficult to add to residency programs. Even worse, universities also lack funding.

Overbooking in medical systems

To change overbooking in medical systems, pivotal changes must be made to the medical system. However, healthcare systems are especially tough to change. For example, poor doctors’ handwriting causes 7000 deaths every year in the U.S. Although handwritten prescriptions are costing lives, the medical system still relies on them even today. This is the result of a complex healthcare system. To implement a change, employees would need training, effective communication and the willingness to change. However, many people are also resistant to change, finding comfort with the current system.

The key stakeholders needed to solve the root cause of women’s health diagnoses are the government and the healthcare system.

However, it must be women making a change.

Although it seems unfair and frustrating that women have to be the ones seeking this change, there’s no other way right now. In the long term, the government and healthcare system would need to change. However, getting the key stakeholders to make a change will be highly difficult and time-consuming. Currently, countless women are suffering, even dying, because of diagnosis delays. We need to reduce the number of women affected immediately by targeting these major problems based on what’s within women’s control. Our solutions need to be made for women, not the government or healthcare system.

Problem #1: Lack of women’s health education

Impact: Women don’t know about women’s health.

Problem-Based Solution: Change school curriculums.

Impact-Based Solution: Seek alternative sources of women’s health knowledge.

Problem #2: Lack of appointment time

Impact: Women can’t get a proper evaluation of their symptoms.

Problem-Based Solution: Change the medical appointment system.

Impact-Based Solution: Create accessible healthcare consultation for women’s health that won’t ignore women’s symptoms.

AI chatbots will empower women to take charge of their health.

Launching physical women’s health consultation and education systems without the help of our key stakeholders. On the other hand, digital solutions will be a lot easier to implement since many women have devices.

AI chatbots will be available to women 24/7. They also would give responses based on medical data, instead of simply dismissing women’s symptoms.

The AI chatbot we need to create must be able to:

  1. Understand the user’s question and intent
  2. Give scientifically accurate responses
  3. Be able to remember the user’s previous inquiries so that it can provide more personalized responses

There’s already a model that satisfies 2 of these requirements.

If there’s already a model that does this, why waste all the time and money creating something new just to do the same thing? Many other large language models (LLM) like ChatGPT can already understand the user’s intent and give proper responses. The only part that needs improvement is ensuring that it gives accurate responses. The process of leveraging and using LLMs would begin with collecting women’s health data through datasets or web scraping for information from reliable sources (with permission).

Then we’d use an API of the LLM model, such as OpenAI’s Davinci. Afterwards, we’ll fine-tune the model with the medical data. Fine-tuning the model means training it on new datasets so that it gets really good at a specific task. In this case, it’ll be getting good at giving women accurate medical responses to their questions. Through fine-tuning, we can make sure that the chatbot answers based on the medical data and not other potentially inaccurate datasets it was trained on. Ensuring that the model only answers based on the medical dataset is crucial so that women don’t get inaccurate information, leading to harmful actions. Another benefit of using LLMs is that they already can remember what the user said previously. This way, the medical chatbot will be able to give personalized responses based on the user’s previous questions.

Tl;DR

  • Women’s health conditions take >3 years to diagnose causing many severe financial, physical and mental health impacts, such as a higher risk of death.
  • Women’s health conditions take a long time to diagnose because doctors and women ignore women’s symptoms.
  • The reason women’s symptoms are ignored is that women know very little about women’s health and don’t have time to advocate for themselves when doctors ignore their symptoms.
  • The reason women don’t know much about women’s health is because it isn’t in school curriculums.
  • The reason women don’t have time to advocate for themselves is because of overbooking leading to inadequate appointment times.
  • The main stakeholders that could solve the issue are the government and the medical system.
  • Government and medical systems have been resistant to adopting change.
  • The short-term solution to tackle long diagnosis times for women’s health is an AI Q&A chatbot that’s accessible 24/7.
  • The AI Q&A chatbot will be able to understand the woman’s question, answer based on medical data and give personalized answers based on what the user said previously.
  • LLMs and APIs such as OpenAI’s Davinci can be used for this chatbot since it can understand the user’s request, provide an answer and remember the user’s comments in the conversation earlier.
  • The LLM will be fine-tuned on medical women’s health data so that all the responses it gives are based on accurate medical information.

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Adeline Lai

Leveraging AI for Women's Health | Activator @ The Knowledge Society👩‍💻