Imagine telling your doctor about severe pelvic pain, unpredictable menstrual cycles that disrupt your life, or extreme mood swings, only to be told it’s “normal,” “stress,” “just your weight,” or “all in your head.” This common scenario plays out for many facing PCOS (polycystic ovary syndrome), endometriosis, and PMDD (premenstrual dysphoric disorder). Unfortunately, this dismissal isn’t a one-off. It’s the start of a years-long battle for answers.
When a patient’s symptoms are minimized or invalidated by healthcare providers, it is medical gaslighting. Medical gaslighting leaves patients feeling crazy or helpless and can directly extend the diagnostic wait. It also erodes faith in medicine. When a person is gaslit repeatedly, they may delay seeking care at all, further worsening outcomes.
PCOS is a hormonal disorder that affects 6–20% of people with ovariesexternal link, opens in a new tab. It can cause irregular or absent periods, heavy bleeding, and infertility. Endometriosis, which affects roughly 10% of people with uteruses globallyexternal link, opens in a new tab, causes uterine tissue to grow outside the uterus, leading to severe pelvic pain, fatigue, gastrointestinal issues, and infertility. PMDD is a severe menstrual-related mood disorder (distinct from mild PMS) in about 5–8% of people who menstruateexternal link, opens in a new tab.
Numbers don’t lie. People with conditions such as PCOSexternal link, opens in a new tab, endometriosisexternal link, opens in a new tab and PMDDexternal link, opens in a new tab often wait years for diagnosis. Research suggests that most wait four to seven years before a formal diagnosis.
These delays come with enormous human costs. Every year spent undiagnosed increases the risk of health complications. For example, untreated PCOS can lead to metabolic syndrome or type 2 diabetes, and persistent pain can damage relationships and mental health. Endometriosis and PCOS often mean infertility struggles, especially when they are not caught and treated early. Endometriosis is associated with high rates of mental health issuesexternal link, opens in a new tab due to high levels of pain that increase the risk of depression and anxiety. PMDD, by definition, involves severe mood swings that can cause an acute crisis. Individuals living with PMDD are at a greater risk of self-harm and suicidal thoughts. One study indicatedexternal link, opens in a new tab that PMDD is often linked to delays in medical support, which leaves many who internalize their feelings and symptoms feeling like those delays are a personal failure.
Delays in medical support can disrupt people’s lives. One analysis found that 75–84% of endometriosis’s annual costs came from reduced workexternal link, opens in a new tab (sick days, quitting, decreased performance). Over time, this can lead to economic inequality, which is already a significant problem for people with a uterus. PCOS has its own burdens, including emotional strain, difficulties concentrating and academic stress. The emotional toll associated with PMDD can lead to a lower quality of life and a strain on relationships.
Why the Delay?
The Normalization of Pain
Medicine and healthcare have a long history of normalizing women’s pain, which leads to larger discrimination against anyone with a uterus, whether or not they are women. More often than not, chronic menstrual pain or fatigue is often brushed off as “normal,”external link, opens in a new tab leading both patients and doctors to ignore red flags. For example, menstrual cramps are so routine in many cultures that people may not realize when the pain is excessive. Even when symptoms are severe, physicians may underestimate their impact on the patient’s health and life.
Methods of Diagnosis
There is no single definitive test for any of these conditions, and testing may be invasive or require multiple procedures. For instance:
- Endometriosis can only be diagnosed via laparoscopyexternal link, opens in a new tab (a surgical procedure), and doctors often try to rule out numerous other problemsexternal link, opens in a new tab first.
- PCOS requires meeting at least two of three criteriaexternal link, opens in a new tab (high androgens, irregular periods, or polycystic ovaries on ultrasound), plus excluding other causes.
- PMDD has no lab marker, and diagnosis hinges on the patient’s historyexternal link, opens in a new tab. In practice, a doctor may ask a patient to keep a daily symptoms diary for 2–3 menstrual cycles before even diagnosing PMDD.
Overlap of Symptoms
These conditions have overlapping symptomsexternal link, opens in a new tab with many other issues. Endometriosis symptoms mimic irritable bowel syndrome or urinary problems; PCOS symptoms, such as irregular cycles and weight changes, overlap with thyroid disorders; PMDD mood swings can look like anxiety or depression. Clinicians may chase those more common diagnoses first, exhausting other explanations before considering the right one.
The Racism Penalty
There are racial disparities when it comes to diagnoses of these and other health conditions, with Black women, in particular, facing far longer waits for diagnosis. Research has shown that Black patients are half as likely to be diagnosed compared to white patients. This gap stems from systemic issues. For example, in an American study of over 15,000 womenexternal link, opens in a new tab, Black, Asian, and Hispanic patients had a lower referral rate to see a pelvic pain specialist than white women, even though these patients received more hormonal treatment and pain medication.
Another study found that factors such as older age, weight, and being Black or Hispanic predicted longer delays in diagnosisexternal link, opens in a new tab. This “racism penalty” reflects both provider bias and healthcare access gaps. Alarmingly, one survey found many medical trainees still harbor false beliefsexternal link, opens in a new tab about the pain thresholds of Black patients. Such misconceptions can lead doctors to dismiss Black patients’ reports of pain as exaggerated or normal, eroding trust and prolonging suffering.
We have less data on how race affects PCOS or PMDD diagnoses, but the pattern is clear: marginalized racial groups generally get slower, poorer gynecological care. In all these cases, systemic racism means Black people, Indigenous people, and people of color often have to push harder and wait longer for the same answers.
Fatphobia in the Exam Room
Weight stigma is another obstacle. Many doctors assume that any reproductive or menstrual issue—or any health problem, from a broken arm to epilepsy—in a fat person must be due to their weight. A Monash University review found pervasive anti-fat bias in PCOSexternal link, opens in a new tab care, where smaller patients were denied access to lifestyle management for treating PCOS, yet fat patients were often told to “just lose weight” and had all their concerns shifted to weight management. Furthermore, doctors tend to doubt their patients’ accounts external link, opens in a new tabof their health behaviors, assuming that being fat means a patient has a poor diet and doesn’t exercise. This means that symptoms such as irregular periods or pain are often quickly attributed to weight gain without thorough investigation. The reviewexternal link, opens in a new tab concluded that weight stigma was a significant barrier to effective PCOS treatmentexternal link, opens in a new tab.
Fat patients with suspected PMDD or endometriosis may be dismissed as simply anxious or “overreacting” because of their weight, implying this is a mental health issue. Weight-related stigma in mental healthcare is an ongoing problem, although there’s not a lot of research about it. Bias leads to a tendency for clinicians to label symptoms in fat patients as psychological. In practice, a fat patient saying “my PMS feels unbearable” might be told they’re “just anxious” or have their mood blamed on diet. This misattribution delays correct diagnosis and harms mental well-being.
Fighting medical gaslighting for fat patients means explicitly reframing the conversation. While weight can be a factor, it’s not the only explanation for severe symptoms. Patients have the right to say, “I know weight matters, but my symptoms are real and need investigation regardless.”
LGBTQIA+ Invisibility and Misunderstanding
Gender and sexuality bias also have a key contributing role. Transgender, nonbinary, and gender-diverse individuals with internal reproductive organs often fall through the cracks of gynecological care. Trans and otherwise gender-nonconforming people with uteruses and ovaries have much higher rates of pelvic painexternal link, opens in a new tab (51–72%) than cisgender women, yet they face unique barriers. Many clinicians assume gynecological pain is a woman’s issue, so if a patient doesn’t present as feminine, their concerns may be dismissed or misdiagnosed as psychological. One study notesexternal link, opens in a new tab that trans and nonbinary patients with endometriosis experience physician bias and gaps in training around gender-affirming careexternal link, opens in a new tab, leading to discrimination or outright denial of basic care.
Many providers are simply unprepared to treat a trans man’s period pain or a nonbinary person’s pelvic ache. It’s not just physical symptoms. Mental health signs like depression or anxiety in queer patients might be blamed on their identity instead of investigating for PMDD, endometriosis, or PCOS.
Healthcare culture that presumes all gynecology patients are women means trans patients may avoid care altogetherexternal link, opens in a new tab, anticipating dismissal or disrespect.
How to Advocate for Your Care
Preparing for the Appointment
While the system is flawed, there are concrete steps patients can take to try and get heard and diagnosed sooner. You can prepare for an appointment in a number of ways, including:
- Tracking your symptoms in detail. Consider using a menstrual tracking or health app. Take note of timing (e.g. mood swings in the week before your period, pain on certain days), severity, and daily impact. The International Association for Premenstrual Disordersexternal link, opens in a new tab (IAPMD) and other groups, such as Endometriosis UKexternal link, opens in a new tab, offer symptom trackers (even printable logs) that align with diagnostic criteria.
- Having dates, symptom counts, and patterns in hand may help a doctor see the reality and also show you’re organized, serious, and ready to collaborate on a diagnosis and treatment plan.
- Research your suspected condition before the visit. Know key facts (e.g. PCOS diagnostic criteria, PMDD symptom listexternal link, opens in a new tab) so you can speak confidently.
- Enlist a trusted advocate, if possible, like a friend or relative who can accompany you, take notes, and support you if you get sidetracked.
- Seek a provider who specializes in endometriosis, PCOS, or PMDD care; consider reading online reviews and asking for recommendations from your social group. If you are fat, BIPOC, or LGBTQIA+, you may want to identify providers who list these populations as people they serve.
During the Appointment: Scripts to Challenge Gaslighting & Demand Action
When you’re in the exam room, assertiveness can be your ally. You can find more information about advocating for yourself in “Dealing With Doctors.” You can say things like those shown below if you feel your concerns are being minimized, and can adapt them to your specific situation.
If the doctor still refuses basic requests (like ordering a diagnostic ultrasound or referring to a specialist), explicitly ask them to note the refusal in your medical record. In many parts of the world, you have the right to have conversations and refusals documented. (This may also be a good time to ask them to refer you to another provider if that is an option for you.)
Script: When Symptoms Are Dismissed/Minimized:
“My symptoms are significantly impacting my daily life (affecting my work/school, mood, sleep, etc.). I need you to take this seriously. I am concerned about conditions like [PCOS/endometriosis/PMDD] given [list specific symptoms you have]. Can we investigate those possibilities, or can you refer me to a provider who specializes in them?”
Script: Demanding Specific Testing/Referrals:
“Based on my symptoms [briefly list, e.g. “chronic pelvic pain, irregular periods for 2 years, heavy bleeding”], I believe I meet criteria for further evaluation. I would like to have a [pelvic ultrasound/endocrinology consult/gynecologist referral] to check for [PCOS/ endometriosis, etc.]. Can you please order this for me today? If there’s a reason not to, please note it and let me know why.”
Script: Addressing Weight Bias:
“I understand that weight can affect health, but I’m concerned that you might be overlooking other causes of my symptoms. I’d like you to rule out medical causes like PCOS, endometriosis, or PMDD rather than only focusing on my weight.”
Script: Affirming Identity & Needs (LGBTQIA+):
“It’s important to me that my gender is respected in this conversation. I have concerns related to my reproductive health [describe symptoms], and I want to make sure they are taken seriously. Can you tell me how you will address my symptoms in a way that’s inclusive of transgender and gender-nonconforming patients, or can you refer me to a provider who is comfortable working with patients like me?”
After the Appointment: Persistence & Documentation
Always obtain and keep copies of all visit notes, lab results, and referrals. In the U.S., federal law (HIPAA)external link, opens in a new tab guarantees your right to these records. In other countries, you have similar rights. Reading your notes can reveal if the doctor wrote “all findings normal” or “patient anxious,” which might be challenged. If something is omitted or incorrect, you can request an amendment.
If you are blatantly dismissed or misdiagnosed, consider filing a complaint with the relevant authorities. First, speak to the office manager or patient advocate. You can file a grievance with the clinic or hospital, and if that fails, you can escalate it to your regional medical board or health ombudsman. In the U.S., for example, the Department of Health and Human Services provides resources and complaint portals for patientsexternal link, opens in a new tab. In any country, patients are often empowered to report discrimination or negligence.
Finally, don’t give up. Sometimes it takes multiple opinions to get the right one. If your current provider won’t budge, it may be worth seeking another gynecologist, an endocrinologist, or a pain specialist. Persistently request referrals, document every step, and lean on your support network. Advocacy and persistence can pay off, and many patients find that the third or fourth doctor is finally willing to investigate further.
Beyond the Exam Room: Collective Action & Finding Community
You’re not alone in this fight. Many are banding together to push for change. On social media and in person, you’ll find campaigns using tags like #EndoWarrior, #PCOSAwareness, and #PMDDAwareness. For example, the International Association for Premenstrual Disorders (IAPMD)external link, opens in a new tab is a patient-led nonprofit that calls itself “a lifeline of support” for those with PMDD. IAPMD and similar groups advocate for more research funding, better medical training, and official recognition of these conditions. Endometriosis and PCOS organizations likewise lobby legislators. For instance, the PCOS Challengeexternal link, opens in a new tab has worked to get congressional resolutions that recognize PCOS as a serious condition. Joining or following these movements amplifies your voice and can alert you to petitions or campaigns to sign.
Young activists and students are also stepping up. There are college-led projects compiling lists of LGBTQ+ friendly or bias-aware gynecologists. Online forums (such as Reddit’s r/Endometriosis and r/PCOS) and advocacy sites feature crowdsourced doctor lists, support group directories, and storytelling platforms. Some even have maps of inclusive providers. If you know of a good specialist, contribute to these lists. Mutual aid groups also share resources (low-cost clinics, symptom management tips, therapy referrals).
Several established organizations provide solid help and information, including “Find a doctor” tools or community forums. The Endometriosis Foundation of America (EndoFound)external link, opens in a new tab educates patients and physicians. PCOS Challenge is a leading non-profit organization dedicated to supporting individuals with PCOS, providing access to support networks and educational materials. IAPMD offers guides, symptom trackers, and support for PMDD patients.
Your Pain is Valid. Your Advocacy Matters.
You have the right to be taken seriously. Health care professionals should respect your body and your identity. You don’t have to wait in silence. It’s outrageous that tens of thousands of people lose years to delayed diagnosis for PCOS, endometriosis, or PMDD, and that biases of race, weight, and gender make it even worse. But there’s hope: awareness is growing, and more tools are emerging.
Together, patients are pressuring the medical field to change, and professional organizations are joining them. This involves better training, challenging dismissive stereotypes, and funding research so diagnoses can happen faster.
You deserve respect. Keep advocating for your own health and for all those who will come after you. Every time you speak up, you chip away at medical gaslighting. The silence around women’s and LGBTQ+ health issues is breaking. Your persistence today can lead to real change tomorrow and may be what finally ends the agonizing wait for you and others.
