Avoiding Misdiagnosis: Why Multiple Opinions Matter
- “The Young & the Restless” star Lily Brooks O’Briant, 18, felt like “no one was listening” to her, or understanding the extreme pain she was suffering from, before being diagnosed with endometriosis. She hopes her story will inspire other women to push for answers.
- Endometriosis occurs when tissue similar to the tissue that normally lines the inside of the uterus, known as the endometrium, grows on the outside of the uterus. It often brings debilitating pain and can often be difficult to diagnose.
- Endometrial cancer begins when cancerous cells form in the tissues of the endometrium or lining of the uterus. Symptoms typically associated with this type of cancer include vaginal bleeding and pelvic pain – like endometriosis.
- Although endometriosis and endometrial cancer cause similar symptoms, research published in E Cancer Medical Science in a 2018 study noted that the “overall risk of endometriosis-associated cancer remains low.”
- Advocating for your own health can lead to better patient outcomes. Sometimes, this includes going back to your doctor multiple times or seeking a second and third opinion from different doctors.
Speaking on a recent episode of the podcast, “State Of Mind with Maurice Benard,” the `18-year-old actress and singer said, “I have endometriosis, which is a disease that affects one in 10 women, which is an insanely high number, for when you think about it. But not enough people know about it.”
Read MoreThe extreme pain left her bedridden for days while menstruating, and she admits to thinking the pain was simply due to her having her period.
She recounted her doctor telling her the pain she was feeling was “normal” and something “every girl goes through” as she had just started getting her period.
O’Briant, who has since had surgery which has reduced her pain significantly, said she ultimately “accepted” the pain until it worsened.
Recounting the pain, which she said would hit her randomly in “hour-long bursts, she said it was so bad that other women compare the discomfort to giving birth.
Noting how the pain would arise at any moment she said, “I could be at an audition or I could be at school or hanging out with friends and then, all of a sudden, I would be in the worst pain of my life.”
Before discovering she had endometriosis, O’Briant said she went to a lot of doctors. She said the pain was so bad she was often nauseous and unable to properly eat or sleep. Her doctor ultimately suspected she had an eating disorder, but her therapist said she had a pain disorder. She was even sent to an allergist.
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“My gynecologist told me this was normal, put me on birth control, that didn’t help. I felt like no one was listening to me. I felt like I was going crazy, because everyone was telling me that the pain was caused by something that it wasn’t, whether it was an eating disorder, or allergies, or whatever,” O’Briant explained.
After choosing to ignore everything, it wasn’t until she saw a social media post by Bindi Irwin, and realized she had been experiencing the exact symptoms, that her mom called endometriosis specialists to get her an appointment.
It wasn’t until she saw the doctor that Bindi Irwin went to that she felt understood and was able to get help.
O’Briant, who hopes her story will inspire other women to push for answers if they are experiencing similar symptoms, ended up having endometriosis excision surgery and has been feeling better ever since.
In an Instagram post recapping the September 2023 procedure, O’Briant said, “Yesterday was a scary but validating day. I had endometriosis excision surgery. The amazing @drseckin, Dr. Chu and their team removed 21 endometrial adhesions that have caused debilitating pain, nausea, migraines & more over the past 3 1/2 years.
“The endometrial tissue was everywhere (my ovaries, bowel, intestines & more) & my left ovary had become distorted & fused to the tube because endo is like having chewing gum in your body. The muscles in my pelvis were constantly pulling to extract the endo that was sitting in places it shouldn’t be which was causing the pain & more scar tissue to develop. Yes my pain was real & No I wasn’t overreacting.”
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She continued, “My extreme pain from the endo is what caused me to lose weight – not an eating disorder or IBS or a reaction to gluten/dairy/caffeine. The migraines were not stress or anxiety induced – it was pain & my body reacting to the endo.
“I know I am INCREDIBLY lucky to be diagnosed so young. Most women live with insane pain for 10+ years before being diagnosed & many are told they are overreacting or that it’s all in their head. I am so very grateful that @bindisueirwin shared her endometriosis journey on insta in March & then when I met her in May at the Steve Irwin gala she was so very kind & strongly encouraged me to find answers.”
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Understanding Endometriosis
Endometriosis can be a very painful disorder. Essentially what happens is the abnormal tissue outside of your uterus thickens, breaks down and bleeds with each menstrual cycle. But because this tissue has no way to exit your body like normal endometrial tissue, it becomes trapped. This can cause cysts, irritation and scar tissue and adhesions abnormal bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other to form.
The Massachusetts General Hospital states that “between 30-50% of people with endometriosis may experience infertility.
“The normal chance of getting pregnant each month for people with no endometriosis is approximately 10-20%, while people with surgically documented endometriosis have a chance of only 1-10%,” the hospital explains.
According to the National Institutes of Health, “The word endometriosis comes from the word ‘endometrium’—endo means ‘inside,’ and metrium means “uterus,” where a mother carries her baby. Healthcare providers call the tissue that lines the inside of the uterus the endometrium.”
Endometriosis usually occurs on or near reproductive organs in the pelvis or abdomen, according to Johns Hopkins Medicine. Other areas is can be found in are the fallopian tubes, ligaments around the uterus (uterosacral ligaments), lining of the pelvic cavity, ovaries, outside surface of the uterus, space between the uterus and the rectum or bladder.
In rare circumstances, it can also grow on and around the bladder, cervix, intestines, rectum, stomach (abdomen), and vagina or vulva.
Symptoms of Endometriosis
According to the WHO, “Endometriosis often causes severe pain in the pelvis, especially during menstrual periods. Some people also have pain during sex or when using the bathroom. Some people have trouble getting pregnant.
“Some people with endometriosis don’t have any symptoms. For those who do, a common symptom is pain in the lower part of the belly (pelvis). Pain may be most noticeable during a period, during or after sex, when urinating or defecating.”
Some may also experience:
- chronic pelvic pain
- heavy bleeding during periods or between periods
- trouble getting pregnant
- bloating or, nausea
- fatigue
- depression or anxiety.
Where Does Endometriosis Occur?
Endometriosis usually occurs on or near reproductive organs in the pelvis or abdomen, according to Johns Hopkins Medicine. Other areas is can be found in are the fallopian tubes, ligaments around the uterus (uterosacral ligaments), lining of the pelvic cavity, ovaries, outside surface of the uterus, space between the uterus and the rectum or bladder.
In rare circumstances, it can also grow on and around the bladder, cervix, intestines, rectum, stomach (abdomen), and vagina or vulva.
“Endometrial tissue growing in these areas does not shed during a menstrual cycle like healthy endometrial tissue inside the uterus does,” Johns Hopkins Medicine explains. “The buildup of abnormal tissue outside the uterus can lead to inflammation, scarring and painful cysts. It can also lead to a buildup of fibrous tissues between reproductive organs that causes them to ‘stick’ together.
Coping Mechanisms for Pain Management
Lily Brooks O’Briant is certainly not alone when it comes to living with chronic pain, according to the Centers for Disease Control and Prevention, 20% of Americans are living day-to-day with chronic pain.
The National Institutes of Health (NIH) is conducting basic pain research to develop strategies and potential medications to better manage pain. The research focuses on key areas including facial pain and how – in some cases – protein increases sensitivity to painful and nonpainful stimuli.
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Research involving mice indicates that rodents with high levels of Cdk5 (a type of protein called cyclin-dependent kinase 5) showed larger calcium surges, indicating that their pain responses were intensified.
“This heightened pain sensitivity is similar to a condition called allodynia. Allodynia causes pain in response to something that isn’t typically painful. The research team was able to reduce pain signaling in those oversensitive mice by blocking their Cdk5,” NIH Distinguished Investigator Dr. Kenneth M. Yamada explained.
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Other areas of research include learning how sound reduces pain and ongoing clinical trials studying pain perception and lower back pain.
Of course, pain management comes with risks especially when powerful painkillers such as opioids are involved. The Centers for Disease Control and Prevention recommends seeking treatment opinions that don’t involve opioids to treat pain when viable. Medicines like over-the-counter painkillers including acetaminophen, ibuprofen, and naproxen have fewer side effects. Other alternatives to opioids include physical therapy and exercise.
The Importance of Advocating for Yourself
Standing up for yourself is important. If you feel that you’re being dismissed or mistreated by a doctor. Getting a second opinion is crucial if something doesn’t feel right. Experts tell SurvivorNet that no one knows your body better than you, so if you feel like something is wrong, keep pushing for answers.
Dr. Zuri Murrell, a colorectal surgeon at Cedars-Sinai Medical Center, previously told SurvivorNet that sometimes, patients need to be pushy.
Be Pushy, Be Your Own Advocate… Don’t Settle
“From a doctor’s perspective, every problem should have a diagnosis, a treatment, a plan for follow-up, and a plan for what happens next if the treatment doesn’t work,” Dr. Murrell said.
And as a patient, “If you don’t feel like each of these four things has been accomplished, just ask! Even if it requires multiple visits or seeing additional providers for a second opinion, always be your own advocate.”
Ultimately, patients advocating for their health can lead to better patient outcomes. This is especially important when you find your doctor has misdiagnosed your symptoms.
A component of advocating for yourself in healthcare includes going back to the doctor multiple times and even getting multiple opinions.
Dr. Steven Rosenberg is the National Cancer Institute Chief of Surgery, and he previously told SurvivorNet about the advantages of getting input from multiple doctors.
Cancer research legend urges patients to get multiple opinions.
“If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care. Because finding a doctor who is up to the latest of information is important,” Dr. Rosenberg said.
Contributing: SurvivorNet Staff
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