Avoiding Misdiagnosis: Why Multiple Opinions Matter
- It took 18 years and 20 different doctors for Dearbhail Ormond to reach her endometriosis diagnosis at age 34. Her symptoms began at age 16.
- The now 42-year-old mom of one hopes to erase the stigma accompanied with endometriosis—a condition when endometrial tissue grows outside the uterus—and inspire others to seek multiple opinions when it comes to their health. She even created the Frendo App, a screening and tracker tool to help endometriosis patients.
- Endometriosis is 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. Though it can come with debilitating pain, it can often be difficult to diagnose.
- Since the disease can be tricky to diagnose, women experiencing symptoms should consider seeking multiple opinions if they are not getting the answers they need about their health.
The now 42-year-old mom of one, who resides in Surrey, of South East England, is sharing her story to help erase the stigma accompanied with endometriosis—a condition when endometrial tissue grows outside the uterus—and inspire others to seek multiple opinions when it comes to their health.
Read MoreSpeaking to “The i,” a British national newspaper, in a recent interview, Ormond explained how she had fallen victim to multiple misdiagnoses over the years, saying, “You feel powerless and as though you are at the mercy of these doctors. I remember my symptoms first starting when I was a teenager away on a family trip and I ended up spending a couple of days in a hotel room because I was so unwell.View this post on Instagram
“I suffered a lot of abdominal pain, vomiting and very heavy bleeding, and that was the start of all the investigations. But no one mentioned endometriosis for years and years.”
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She continued, “Due to the invisible nature of the disease, it is really difficult for the people around you to understand the pain.”
Ormond, who said she was once misdiagnosed with irritable bowel syndrome (IBS), described the horrible pain as if a rope was tied around her stomach, getting “tighter and tighter,” and when the pain worsened, sometimes she would collapse—once a fall led her to break her sternum and another instance she was left with a cut on her chin.
She wasn’t diagnosed with endometriosis until a surgeon found “large piece of endometriosis tissue in her ovaries,” when she was 34 years old, the news outlet explains.
Regardless of her being told she would have infertility issues, Ormond, who gave birth to her daughter three years ago, told The i, “When I became pregnant against all the odds, I felt disbelief because I lacked trust and faith in my body and my health.”
View this post on Instagram
Referring to recent studies done by Frendo in the UK, showing discrimination in the workplace among women with endometriosis, Ormond, who also claims to have lost a job amid her battle with the condition, said, “I would have hoped employers would be more supportive of conditions such as endometriosis now, but sadly, our statistics are not showing that.
“Unfortunately, there is still too much stigma and shame attached to female health issues and a lack of openness and understanding in the workplace leaves many women feeling pressured or shamed when taking time off due to ill health and unable to speak out if they are being discriminated against.”
“Without the right support, chronic conditions such as endometriosis can prevent women from reaching their full potential in the workplace, not only affecting the employee but also the employer’s bottom line as a result of absenteeism or loss of productivity,” she concluded. “With more education, employers can be in a better position to support and retain staff by helping them access the tools they need to manage their health alongside their career.”
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Meanwhile, Ormond has also taken to her Instagram page to reveal she was diagnosed with adenomyosis, just four months after her daughter was born and 24 years after her endometriosis began.
According to John Hopkins Medicine, adenomyosis is “a gynecologic condition that causes endometrial tissue in the lining of the uterus to grow into the muscular wall of the uterus,” which “enlarges the uterus, and may lead to very heavy menstrual bleeding.”
The discovery led to her decision to get a hysterectomy.
Describing why she chose to undergo a hysterectomy, Ormond wrote in an Instagram post, “I want to live without pain. I want to be the best mother I can be. I want to achieve many things in my career. I want to have a week where I feel well. I want to have some control of my health.
“It’s my body after all. I don’t want to be taking medication for the rest of my life. I have tried everything else I know. I have been dealing with this for 26 years. These conditions effect your body, your mind, your self esteem, your career, your relationships, your mental health, your income, your everything… I’m tired.”
She added, “It’s a shame to achieve a rather simple list like the above we have to go through so much as women. I’m sharing this because once again I want awareness around the grave impact these diseases have on our entire lives. It is a decision to help the adenomyosis. It is still unclear if a hysterectomy helps endometriosis. I will be sharing my journey through this, hoping it helps others in some way.”
View this post on Instagram
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.
This disorder has been associated with infertility, which is why Ormond has called the her daughter’s birth a “miracle.”
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
Ormond 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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