(844) 863-6700Dr. Thais Aliabadi was recently featured in a SELF article discussing the challenges of diagnosing endometriosis and its impact on those who suffer from it. The piece explores the struggles many face in getting an accurate diagnosis and the importance of recognizing the signs early.
Model and actress Lori Harvey lived with symptoms for more than a decade.
On the latest episode of the She MD podcast, model and actress Lori Harvey revealed that she spent years thinking something was “off” with her body, only to be repeatedly assured by her doctor that she was “fine.”
“I’ve been so frustrated. I’ve been going to my gynecologist because I’ve just been feeling like something’s off in my body,” Harvey told cohosts Thaïs Aliabadi, MD, a celebrity ob-gyn in Los Angeles, and women’s health advocate Mary Alice Haney, on the episode. “But every time I go to her, she’s like, ‘You’re fine, you’re fine, you’re fine. Nothing’s wrong.’ And I was like, ‘But I don’t feel fine. I feel like something is just off.’”
Harvey said that it wasn’t until she was referred to Dr. Aliabadi that things changed. She was told by Dr. Aliabadi that there were “quite a few things going on” with her body.
She was diagnosed with the hormonal disorder polycystic ovary syndrome (PCOS) and endometriosis, a painful condition where the type of tissue that forms the lining of the uterus is found outside the uterus.
Harvey said she eventually realized she had been dealing with symptoms of both conditions since she was 16, noting that she would “blow up like crazy” after she ate, despite exercising regularly. The now 28-year-old also says she dealt with acne and facial hair, which are common symptoms associated with PCOS.
“I used to have the most excruciating periods of my life, every single time I felt like I needed to go to the hospital, just crazy cramps,” she said. “They’d be like, ‘Oh, just take some Tylenol. You’ll be fine.’ And I’m like, ‘There’s no way this is normal.’ And [Dr. Aliabadi told me, ‘Yeah, babe, you’re right. It was not normal, and I’m so sorry that you’ve just been living with this.’ So she literally changed my life.”
Unfortunately, Harvey’s story isn’t rare, Dr. Aliabadi tells SELF. “I’ve had patients who have been to 50 gynecologists and not one person properly diagnosed them,” she says. “It’s because [endometriosis] affects women, not men.” But Dr. Aliabadi stresses that endometriosis isn’t a rare illness. “It’s one of the top causes of infertility for women on this planet,” she says. “This is not some zebra diagnosis.”
Endometriosis can be a debilitating condition—or it can be silent.
Symptoms of the condition include chronic pelvic pain that’s worse before and after your period, pain during sex, heavy periods, and even pain while you pee or poop, according to the American College of Obstetricians and Gynecologists (ACOG). It’s also possible to have endometriosis with no symptoms, only to have it detected when you can’t get pregnant or when you’re having surgery for something else.
As Harvey pointed out, some women are told their symptoms are normal when they’re anything but. While Dr. Aliabadi says many women are aware that something is off with their body when they have endometriosis, she points out that it can be mentally defeating to be told you’re “fine” when you’re not. “A lot of patients have trauma,” she says. “They’re depressed because of years of pain.”
Dr. Aliabadi specifically calls out these symptoms as red flags for endometriosis
Pain is disrupting your life. “It’s keeping you home from school. Someone needs to pick you up. You have to skip work. You change your social plans during your period,” Dr. Aliabadi says. “You end up in an urgent care or emergency room because of your pain.”
The pain is more than cramps. “Some patients have pain with sex with deep penetration,” Dr. Aliabadi points out.
You have recurrent “UTIs.” Because endometriosis can cause urinary symptoms, women with endometriosis may repeatedly end up visiting their doctor with UTI-like symptoms, only to have their tests come back negative for urinary tract infection. “They’re treated with antibiotics, but the symptoms don’t go away,” Dr. Aliabadi says.
The average time for women to get a proper endometriosis diagnosis is shockingly bad.
Every study cites slightly different numbers for this. One scientific analysis published in 2024 found that the average amount of time it took women to get a proper diagnosis of endometriosis was between 5.4 and 11.4 years.
Another study put that range at seven to nine years. The bottom line: Women are having to wait a really long time to get a proper diagnosis and treatment for endometriosis.
OK, but why? “It’s very simple: Women get dismissed in the healthcare system,” Dr. Aliabadi says. She points out that it takes time to diagnose endometriosis and many doctors just don’t spare it for patients. It’s also so important to take the time to explain endometriosis to patients.
Doctors are busy, but Endometriosis is a condition patients need to fully understand
Dr. Aliabadi adds that the healthcare system as a whole tends to view women as “paranoid until proven otherwise.” Women are often told that their symptoms are mental, and they’re written off as a result, she says. “Every single day in my office, I see women who have been dismissed,” she continues. “Even when I diagnose them and operate on them and take a video of their pelvis [and] I have pathology reports to prove it—they’re still dismissed by their doctors.”
Doctors can often clinically suspect endometriosis just by listening carefully to a patient, but recognizing it in surgery isn’t always straightforward. It takes an experienced laparoscopic surgeon to identify endometriosis when it doesn’t show up in the classic way. Sometimes, endometriosis appears as very subtle changes, such as fine white streaks in the tissue.
These are easy to miss unless you know exactly what to look for.
But when women are misdiagnosed as not having endometriosis, Dr. Aliabadi says they can start to question what they’re feeling. “These patients really think they’re mentally ill,” she says. “They start doubting themselves and their symptoms.”
Dr. Aliabadi emphasizes the importance of seeking answers.
It’s crucial for women to educate themselves on endometriosis, according to Dr. Aliabadi—and she even recommends “self-diagnosing at home.”
“Write the questions down, go to your doctor, and say, ‘I have endometriosis and I need you to do this, this, and this for me,’” she says. “If the doctor still dismisses you, you want to go to an endometriosis specialist.” These doctors will typically take more time to learn about your symptoms and better understand how the disease can show up, she says.
Overall, Dr. Aliabadi emphasizes the importance of listening to your body—and continuing to seek answers. “Women are so in tune with their bodies,” she says. “When someone walks into my office and says, ‘Something is wrong with me,’ 99% of the time, something is wrong. We have to start listening to them.”
As for Harvey, she shared that she started taking the diabetes medication Metformin, which helps manage blood sugar levels, and it’s made a big impact on her life. She also said she can now eat and exercise without gaining or losing weight at “alarming” rates. “I feel good in my body, finally, for once,” she said. “And I feel like what I should have been feeling like at 16.”
Written by Korin Miller, read the full article here: SELF – Endometriosis Pain and Diagnosis
