Interview with Olivia Culpo, Endometriosis Advocate: Her 12-Year Battle and Road to Recovery

For far too long, women have been taught that debilitating period pain is simply part of being a woman. It is not. Painful periods are not normal, and we need to say that louder, more often, and without apology.

In this conversation, Olivia Culpo shares the deeply personal story behind her endometriosis diagnosis, including years of pain, embarrassment, dismissal, and finally, relief. Alongside Dr. Thaïs Aliabadi and Mary Alice Haney, we unpack what endometriosis can look like, why it is so often missed, how it can affect fertility, and what it means to advocate for ourselves when something feels wrong.

Table of Contents

• Olivia Culpo on Endometriosis, Advocacy, and Recovery
• Understanding Endometriosis
• Treatment, Surgery, and Long-Term Management
• Endometriosis and Fertility
• Advocacy, Support, and the Power of Being Believed
• Life Beyond the Diagnosis
• FAQ: Endometriosis Symptoms, Diagnosis, and Next Steps
• Our Takeaway: Keep Asking Until You Get Answers

Olivia Culpo on Endometriosis, Advocacy, and Recovery

What made you decide to speak publicly about your endometriosis journey?

For Olivia, speaking about endometriosis is personal because she remembers how isolating it felt to live with symptoms that were intimate, painful, and difficult to explain. From the time she had her first period, she knew something did not feel right. Yet she was embarrassed by many of her symptoms and hesitant to discuss them, even with her family.

That silence is exactly why she now feels responsible for using her platform. Endometriosis can involve painful periods, bowel symptoms, bladder symptoms, bleeding, bloating, and pain in deeply personal areas of the body. It is not always easy to put those experiences into words. But when we keep quiet, we can also end up believing that we are alone or overreacting.

Olivia’s message is simple and powerful: if pain is preventing us from functioning, it deserves to be taken seriously. We do not need permission to seek answers.

When did your symptoms begin, and how did they change over time?

Olivia’s symptoms began with her first period. Some signs were present early, but the debilitating pain became more severe as she got older, particularly in her late twenties. Eventually, the pain was so intense that she could not reliably leave the house or go about her normal day.

That distinction matters. There is a difference between mild menstrual discomfort and pain that controls our schedule, forces us to cancel plans, makes us fear our own cycle, or leaves us unable to work. Olivia describes the kind of pain that feels frightening because we know something is wrong, yet no one can explain why.

Her disease included rectovaginal endometriosis, meaning endometriosis was located in the area between the vagina and rectum. She describes severe lower back and rectal pain that many women casually call “butt lightning,” a sudden, sharp, electric type of pelvic pain that can be intensely distressing.

We should never dismiss those symptoms as dramatic, embarrassing, or something to simply push through. When pain escalates, spreads, or begins interfering with life, it is time to seek a clinician experienced in endometriosis.

What did it feel like to be dismissed by doctors for so many years?

Olivia saw at least 12 doctors before getting the right diagnosis. She was told that painful periods were normal, offered birth control without a broader evaluation, asked whether she was exaggerating, and even questioned about whether she was correctly interpreting her own symptoms.

That is the part of this story that is so heartbreaking. Olivia had access to care, insurance, resources, and the ability to keep pursuing opinions. Yet she still spent years being dismissed. We need to recognize that the same experience can be even more difficult for people with fewer resources or less access to specialized care.

When someone is in severe pain and hears repeatedly that nothing is wrong, the damage is not only physical. It can create fear, self-doubt, and a feeling of being gaslit by the medical system. Many patients ultimately say that receiving a diagnosis makes them feel validated. They have not suddenly become sick. They have finally been heard.

If we feel dismissed in a medical appointment, we can take notes, document symptoms and timing, ask direct questions, request clarification, and seek another opinion. Our guide to advocating for yourself at the doctor offers practical ways to make those conversations more productive.

What is the most important message you want women to hear about period pain?

We cannot say it enough: painful periods are not normal.

Period pain may be common, but common does not mean harmless or something we must endure. Severe pain can be a symptom of endometriosis, adenomyosis, fibroids, ovarian cysts, infection, or other gynecologic conditions. We do not need to diagnose ourselves, but we do need to raise the concern and pursue an appropriate workup.

Dr. A often sees patients whose symptoms were minimized for years. Endometriosis is one of the leading causes of chronic pelvic pain in people of reproductive age, yet diagnosis can be delayed for many years. The issue is not that the symptoms are impossible to recognize. Often, the first step is simply listening carefully to the patient in front of us.

Understanding Endometriosis

What exactly is endometriosis?

Endometriosis occurs when cells similar to the lining of the uterus grow outside the uterus. The lining inside the uterus is called the endometrium. During a typical cycle, hormones cause that lining to thicken in preparation for pregnancy. If pregnancy does not occur, the lining sheds as a period.

With endometriosis, endometrial-like cells outside the uterus can respond to hormonal changes too. These cells may be located around the ovaries, fallopian tubes, bladder, bowel, rectum, pelvis, or other areas. When they become inflamed and break down cyclically, the body can react with inflammation, scar tissue, adhesions, and pain.

Over time, that inflammatory process may cause symptoms to worsen. What begins as a painful day before or during a period can gradually become pain that starts earlier, lasts longer, or occurs throughout the month.

About 10% of women are affected by endometriosis, which means most of us likely know someone who has it, whether or not she has been diagnosed. For a deeper overview of symptoms, causes, diagnosis, and treatment, visit our endometriosis patient education page.

What are the symptoms of endometriosis?

Symptoms can vary widely. Not every person experiences every symptom, and symptom severity does not always match the extent of disease. Still, the signs that deserve attention include:

• Severe or progressively painful periods, especially when pain disrupts school, work, sleep, or daily activities
• Chronic pelvic pain, including pain that continues outside menstruation
• Heavy menstrual bleeding or painful, heavy cycles that may also suggest adenomyosis
• Pain with deep penetration during sex
• Pain with bowel movements, particularly around a period
• Pain with urination or recurring bladder irritation
• Recurrent UTI-like symptoms without consistently positive urine cultures
• Severe cyclical bloating and lower abdominal discomfort
• Difficulty getting pregnant or concerns about fertility

One recurring pattern is bladder symptoms that are treated repeatedly as urinary tract infections without confirmation on urine culture. Another is cyclical bloating that is assumed to be only a digestive issue. These symptoms may have multiple possible causes, but in reproductive-age women with pelvic pain, endometriosis needs to be part of the conversation.

Can an ultrasound rule out endometriosis?

No. A normal ultrasound does not rule out endometriosis.

Some findings, such as an endometrioma, can be seen on ultrasound. An endometrioma is an ovarian cyst associated with endometriosis and can point to more advanced disease. That was the crucial finding in Olivia’s case. During her appointment, Dr. A identified an endometrioma on her ovary, which helped make the diagnosis clear.

But many endometriosis lesions do not show up on standard imaging. They may be very small, subtle, located behind the uterus, on the bowel, around the bladder, or elsewhere in the pelvis. Definitive diagnosis is often made through laparoscopy, a minimally invasive surgical procedure in which a surgeon examines the pelvis and may remove suspicious tissue for pathology.

It is also important to understand that surgery is not required for every patient before treatment begins. When symptoms strongly suggest endometriosis, clinicians may recommend medical treatment first and assess how symptoms respond.

What is the difference between endometriosis, endometrioma, and adenomyosis?

These terms are related, but they describe different locations of endometrial-like tissue:

• Endometriosis: Endometrial-like cells are found outside the uterus, often in the pelvis.
• Endometrioma: Endometriosis involves the ovary and forms a cyst.
• Adenomyosis: Endometrial-like tissue grows into the muscular wall of the uterus.

Adenomyosis can contribute to very heavy, painful periods and may be associated with miscarriage risk. Surgical removal of endometriosis outside the uterus does not necessarily treat adenomyosis within the uterine wall. That is why an individualized plan can include hormonal suppression even after surgery.

Treatment, Surgery, and Long-Term Management

Is surgery the only treatment for endometriosis?

No. Treatment should generally move from the least aggressive option to more intensive approaches based on symptoms, fertility goals, response to treatment, and the presence of findings such as an endometrioma.

Options discussed in this conversation include:

• Low-dose combination birth control pills
• Progesterone-only pills
• Progesterone injections
• Progesterone IUDs
• Medications that lower estrogen levels, including treatments such as Orilissa or Myfembree
• Outpatient laparoscopic excision surgery with an experienced endometriosis surgeon

Estrogen can stimulate endometriosis implants. Progesterone-based treatment can slow their growth and help calm the inflammatory process. A progesterone IUD may be particularly useful because it acts locally and can have fewer systemic effects than some other hormonal options.

Olivia has used a progesterone IUD as part of her ongoing management. The goal is not just birth control. It is also suppression of symptoms and disease activity.

Why is excision surgery different from simply burning lesions?

Endometriosis surgery is technical. A surgeon may need to identify lesions that are not the classic dark brown spots people associate with endometriosis. Some lesions are subtle, pale, white, filmy scars that are easy to miss without experience.

For appropriate surgical candidates, excision means removing the lesion rather than simply ablating or burning the visible surface. The tissue can then be sent to pathology. It is especially important to find a surgeon who has real experience with endometriosis because lesions can occur on the bowel, bladder, rectum, ovaries, fallopian tubes, behind the uterus, and throughout the pelvis.

Olivia’s surgery brought meaningful relief. After spending years unable to function through her cycles, being able to move through daily life without severe pain felt like a miracle. That relief is why she continues to advocate so fiercely for earlier recognition and care.

Does endometriosis go away after surgery?

Endometriosis is a lifelong condition that usually requires long-term management. Surgery can remove existing disease and improve symptoms, but surgery alone does not guarantee that endometriosis will not return.

This is a point Olivia wants people to understand clearly. A successful procedure does not mean the condition has disappeared forever. Following surgery, many patients need hormonal suppression until they are ready to pursue pregnancy or until menopause, depending on their personal circumstances and medical plan.

Without suppression, endometriosis symptoms or endometriomas can recur. That is why annual surgeries should not be treated as routine maintenance. The goal is a comprehensive plan that includes expert surgery when needed and medical suppression afterward.

Endometriosis and Fertility

How can endometriosis affect fertility?

Endometriosis may affect fertility in several ways. Chronic pelvic inflammation can affect egg count and egg quality. Scar tissue and adhesions can affect the fallopian tubes. Inflammation can make it harder for the egg to travel from the ovary into the tube, where fertilization typically occurs. Adenomyosis can also affect the uterine environment and may increase miscarriage risk for some patients.

This is why early diagnosis matters so much. Dr. A’s concern is not only the pain patients are suffering today, but also the fertility options that may be lost over time if the condition is untreated.

For patients with painful periods and concern for endometriosis, checking ovarian reserve can be part of the care plan. Anti-Müllerian hormone, or AMH, is a blood test that can be done at any point in the cycle. An ultrasound follicle count may also provide information about ovarian reserve.

These tests do not diagnose endometriosis, nor do they predict every fertility outcome. But they can help guide conversations about monitoring, fertility preservation, and when to consider egg freezing.

What should someone know if they hope to get pregnant in the future?

We need a roadmap, not panic. For someone whose symptoms are well managed on hormonal suppression, the plan may be to remain on treatment until pregnancy is desired. Then, under the guidance of a clinician, treatment can be paused when it is time to begin trying.

Olivia’s care plan includes removing her IUD when she is ready to try for pregnancy, rather than stopping suppression long before then and risking a return of severe pain. Her surgery, strong egg count, and long-term suppression have helped reduce inflammation and support her fertility goals.

Each patient’s situation is different. If symptoms are severe, egg count is low, fertility has been affected, or pregnancy does not occur as expected, we should seek specialized fertility guidance. The important thing is to start the conversation early, not only after years of pain or unsuccessful attempts to conceive.

Can PCOS and endometriosis occur together?

Yes. PCOS and endometriosis are separate conditions, but they can coexist. PCOS is associated with irregular periods, acne, weight changes, hair loss, facial or body hair growth, insulin resistance, and a higher number of follicles in the ovaries. Endometriosis is an inflammatory condition involving endometrial-like tissue outside the uterus.

Because many patients with PCOS may also have endometriosis, it is important not to assume that one diagnosis explains every symptom. Even when someone has PCOS, painful periods, painful sex, pelvic pain, bladder symptoms, or severe bloating should still prompt consideration of endometriosis.

Advocacy, Support, and the Power of Being Believed

What would you tell someone who believes they may have endometriosis?

Olivia’s advice begins with self-trust: we are not crazy, and we should keep advocating for ourselves.

She remembers being in so much pain that she could barely function while others told her to go to work, tough it out, or accept that periods are unpleasant. At her lowest moments, she turned to online communities on YouTube, Reddit, Instagram, and Facebook. Those spaces helped her recognize patterns in other people’s stories and realize that her symptoms might have a name.

Support communities can be incredibly meaningful, especially when we feel alone. They should not replace medical evaluation, but they can give us language for our experiences, help us feel less isolated, and encourage us to keep pursuing care.

When preparing for an appointment, we can bring a short symptom history that includes:

• When pain occurs in relation to the menstrual cycle
• How severe it is and how it affects daily life
• Bleeding changes, bloating, urinary symptoms, bowel symptoms, or pain with sex
• Medications and treatments already tried
• Family history and fertility goals

If one clinician does not listen, we can seek another. Ideally, we should find an experienced endometriosis specialist who understands the condition, knows how to evaluate it, and can discuss both medical and surgical options.

Why does validation matter so much in chronic pain?

Chronic pain can reshape every part of life. It can affect relationships, work, confidence, mental health, and the ability to care for ourselves. When pain goes untreated, some patients are prescribed strong pain medications and then unfairly labeled as drug-seeking, when the real issue is that their underlying condition has not been diagnosed or properly managed.

We need to see the whole person. A patient in pain is not a problem to be dismissed. She is someone who deserves investigation, compassion, and a plan.

The first words many patients say after hearing the diagnosis are, “I feel validated.” That should make all of us pause. No one should have to spend years proving that their pain is real.

Life Beyond the Diagnosis

How did support from your partner make a difference?

Endometriosis affects relationships because it affects everyday life. Olivia shares that her partner, Christian, saw firsthand how severe her pain could be. His support was practical and loving: drawing baths, baking cookies, asking what she needed, and showing up without making her feel like a burden.

That example matters. Partners, friends, and family members do not need to fully understand the medical details to offer meaningful support. We can believe someone’s pain, ask what would help, learn about the condition, and avoid minimizing language.

Compassion is not complicated. Sometimes it looks like a warm meal, a ride to an appointment, help with daily tasks, or simply saying, “I believe you.”

What have difficult relationships taught you about self-care?

Olivia also speaks candidly about moving through a toxic relationship. She describes reaching a moment of clarity after praying for the ability to see and hear the truth of her situation. Leaving was difficult, but it was an act of self-protection and something she is proud of.

There is an important connection here. When we are deeply unhappy, fearful, or trapped in an unhealthy relationship, it can become much harder to advocate for our health. Caring for our physical well-being and emotional well-being are not separate projects. They support each other.

A difficult season is not the whole story. Olivia’s perspective is that hard chapters can eventually make us more grateful for safety, joy, health, and supportive love. Her mother’s advice remains her anchor: work hard and be a good person.

What does your everyday wellness routine look like now?

Olivia’s approach to wellness is refreshingly balanced. For movement, she enjoys circuit training and prefers having a workout buddy or group environment to make exercise more fun and consistent.

For skincare, she prioritizes sleep, happiness, gratitude, hydration, and protecting the skin barrier. She avoids over-cleansing, choosing cleansing balms or lotion-based cleansers instead. She also considers retinol an important part of her routine after her late twenties.

When it comes to food, she no longer follows the extremely rigid approach she once did. Instead, she aims for balance. She describes it as an 80-20 approach, though she laughs that it can be closer to 70-30 in real life. The point is moderation, listening to the body, and allowing room for enjoyment without overdoing it.

That may be the best kind of wellness advice: drink water, move in a way we enjoy, sleep, practice gratitude, and let ourselves have the chocolate cake sometimes.

FAQs: Endometriosis Symptoms, Diagnosis, and Next Steps

Are painful periods always caused by endometriosis?

No. Not every painful period means endometriosis. But severe, worsening, or life-disrupting period pain should be evaluated, particularly when it occurs with pelvic pain, bowel symptoms, bladder symptoms, painful sex, heavy bleeding, bloating, or fertility concerns.

Can a normal ultrasound mean that I do not have endometriosis?

No. Many people with endometriosis have normal ultrasound findings. An ultrasound may identify an endometrioma, but it can miss lesions elsewhere in the pelvis. Diagnosis and treatment decisions should be based on the complete clinical picture.

Does endometriosis stop after menopause?

Symptoms often improve after menopause because estrogen levels decline. However, hormonal treatment after menopause and conditions such as adenomyosis may require individualized discussion with a clinician.

What should I do if I cannot see an endometriosis specialist right away?

Speak with a qualified clinician about your symptoms and treatment options. Hormonal therapies, including low-dose combination pills, progesterone-only pills, or a progesterone IUD, may be appropriate for some patients. Do not stop pursuing care if symptoms persist, worsen, or interfere with life.

Our Takeaway: Keep Asking Until You Get Answers

Olivia’s story is not only about surviving 12 years without a diagnosis. It is about what can happen when we stop accepting dismissal as an answer. Her life changed when someone listened, identified the signs of endometriosis, and created a long-term plan for pain control, fertility preservation, and recovery.

We need more conversations like this in homes, schools, clinics, and communities. We need parents to ask daughters about painful periods. We need clinicians to hear pelvic pain without judgment. We need partners to understand that support matters. And we need every person living with unexplained pain to know that persistence is not overreacting.

Painful periods are not normal. We deserve to be believed, evaluated, treated, and supported.