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Doctors keep misdiagnosing women, with lethal consequences

BY Susan Carleton

27th Jan 2024 Health Conditions

7 min read

Doctors keep misdiagnosing women, with lethal consequences
Women face an epidemic of missed diagnoses in the UK, but knowing the signs of the most common overlooked diseases can help you take charge of your health
At 26, Jolene Stockton was already well on her way to a brilliant career as a professional golfer. Rounding out her good fortune, she and her husband were expecting their first child, and the pregnancy was going well.
Everything changed six months after the birth of her daughter, when Jolene's energy began to wane. "Walking a short distance was difficult," she recalls, "and I wanted to sleep all the time."
Jolene started losing weight, despite her almost constant hunger—and constant eating. Her heart raced, and she frequently felt overheated. Then her left eye began to protrude.
Only when she applied for life insurance and was rejected because of an abnormal blood test did she learn the cause: a malfunctioning thyroid gland.
Thyroid disorders are one of several diseases commonly misdiagnosed— or missed altogether—in women. Delays in treatment from faulty diagnoses can put affected women at risk of major complications—some even fatal.
What makes a disease hard to detect? One reason is vague symptoms, that come on gradually and are difficult for the patient to describe. That is why women should know about commonly missed diseases. The following are six of the most frequently misdiagnosed:

Thyroid disease

Jolene Stockton's weakness, weight loss and eye trouble were caused by Graves' disease. This disorder prompts the thyroid gland—which produces hormones that help regulate the body's use of energy—to become overactive and pump out far more thyroid hormone than normal.
The result is hyperthyroidism, a condition that speeds up bodily processes, including heartbeat, digestion and metabolism.
Thyroid disorders affect around 1.1 million Britons, 90 per cent of them women. The groups at highest risk include women in their twenties and those over 50.
"Thyroid irregularity such as Graves' disease often goes unspotted because the signs on examination are not that obvious," says Sir Richard Bayliss, chairman and medical trustee of the British Thyroid Foundation.
"Graves' disease often goes unspotted because the signs on examination are not that obvious"
"That's why it is essential that patients describe the symptoms they have experienced as precisely as possible."
Jolene's doctor prescribed anti-thyroid drugs, which controlled her symptoms until her third child was born. When the disease flared again, Jolene received radioactive iodine, which destroys overactive thyroid tissue.
This treatment usually brings a permanent remission but may require lifelong use of thyroid hormone replacement therapy.
Although not yet playing professional golf, Jolene eventually hopes to make a comeback. "For now," she says, "I'm happy just to be able to take care of my family."

Endometriosis

Woman suffering from endometriosis abdominal pain
By the time she was 22, Lam Lenaghan had learnt to live with painful menstrual periods. But one month the pain was particularly severe, involving the lower back as well as the abdomen.
Her doctor thought she had a urinary tract infection and prescribed antibiotics. But her discomfort persisted, accompanied by bloating, painful intercourse and severe constipation.
After visiting six doctors, Lam finally saw one who diagnosed endometriosis, a disease that affects an estimated 1.5 million women in the UK.
With endometriosis, tissue that normally lines the uterus is found in other areas of the pelvic cavity and abdomen, sometimes causing debilitating pain, particularly during menstruation.
Untreated, it can lead to scarring and formation of adhesions. It is also suspected to be a cause of infertility.
"It can lead to scarring and formation of adhesions. It is also suspected to be a cause of infertility"
Says Keith Edmonds, consultant obstetrician and gynaecologist at Queen Charlotte's and Chelsea Hospital, London: "Because endometriosis produces many of the same symptoms as other gynaecological conditions, it can easily be misdiagnosed at first."
A recent survey by The National Endometriosis Society revealed that more than a quarter of its 2,000 members had suffered for ten years or more before a correct diagnosis was given.
Accurate diagnosis of this requires a special viewing device called a laparoscope, which is inserted through an incision to view the linings and organs of the abdomen and pelvis.
During Lara Lenaghan's treatment, the doctor used a laser to vaporise several areas of endometriosis on her large intestine and uterus. Now 25, she had her first child in February.
After surgery, doctors often rely on medication to keep endometriosis from returning.
Treatments include oral contraceptives and drugs such as danazol and zoladex. In less severe cases, aspirin and non-steroidal anti-inflammatory drugs (NsAins) are used to control pain.

Pelvic inflammatory disease

A 19-year-old secretary went to her GP, complaining of a persistent vaginal discharge. The doctor told her she had a yeast infection and sent her home with anti-fungal suppositories.
A week later, she was in a hospital casualty department with high fever and excruciating abdominal pain. There a pelvic infection was diagnosed, and she was given antibiotics.
Although her doctors didn't know it at the time, the secretary was actually suffering from pelvic inflammatory disease (PH)), an infection of the reproductive organs.
In 1992 some 6,500 women were treated for PID at genitourinary clinics in England and Wales. Yet many are unaware of their condition because doctors may not recognise the symptoms. And sometimes there are none.
PID usually develops when infections, most often sexually transmitted, are not treated promptly and aggressively enough with antibiotics to be totally wiped out. Frequent changes of sexual partner and unprotected intercourse increase the risk of infection.
"This near-fatal complication was a direct result of PID"
Fifteen years after her first casualty department episode, the former secretary was happily married and expecting a baby.
Two months into the pregnancy, she developed an agonising pain in her left side and was rushed to hospital. There she underwent emergency surgery for a ruptured tubal pregnancy.
This near-fatal complication was a direct result of PID. The disease had caused scarring of her fallopian tubes, which made it impossible for the fertilised egg to pass through and become implanted in the uterus.
Approximately half of the 4,000 cases of tubal pregnancy that occur in England and Wales each year are thought to have been linked to PID.
PID may also result in the complete blockage of the fallopian tubes, which must be open for a woman to conceive. As a result, each episode of PID doubles a woman's chance of infertility. The scarring or blockage can sometimes be reversed with microsurgery.

Systemic lupus erythematosus

Woman suffering from lupus symptom fatigue while sat on sofa
Michelle Housum was 15 when she developed a persistent ache in her chest and swelling in her fingers and ankles. Her paediatrician diagnosed pneumonia, which improved with antibiotics. The joint problems were growing pains, the doctor said.
Within a few months, however, the teenager's elbows, knees and wrists had become painful and enlarged, and she was also plagued by rashes, fever and fatigue.
Finally she entered the hospital, weighing a skeletal four stone nine and feeling so weak she could barely lift her head.
Tests revealed Michelle had systemic lupus erythematosus, an autoimmune disorder in which the immune system attacks normal tissue.
An estimated 40,000 Britons suffer from lupus. The disease affects nine times as many women as men. Although it can occur at any age, adult women make up the majority of patients. Those of African or Asian descent are at particular risk.
"Without treatment, kidney failure, seizures or debilitating arthritis may develop"
Lupus is difficult to diagnose because its many symptoms can vary between patients. Says Brian Harmer, director of the charity Lupus UK, "Lupus can mimic other diseases such as multiple sclerosis and rheumatoid arthritis. There is currently no single test to give a definite diagnosis."
The illness frequently starts with fatigue, low-grade fever, hair loss, sun sensitivity, and sores in the nose, mouth and throat. A facial rash on both cheeks and over the bridge of the nose is another common sign.
Lupus can affect every organ system in the body, causing heart, lung and kidney problems, as well as headaches.
Without treatment, kidney failure, seizures or debilitating arthritis may develop. No cure is available. But if the patient is treated early enough, the immune system can be suppressed and the disease arrested before significant damage is done.
Michelle Housum controls her illness now with corticosteroids, which suppress the immune system overactivity, and an anti-malarial drug, which controls the rashes, fever and muscle aches. Milder cases may be treated with low-dose corticosteroids, aspirin and NSAIDs.

Interstitial cystitis

In 1981, 32-year-old Marie Grimes experienced symptoms of a bladder infection, which her doctor treated with antibiotics even though her urine tested negative for bacteria.
But day after day she felt an ache in the lower abdomen, accompanied by shooting, burning urethral pains that came and went without warning. Her frequent need to urinate made her virtually housebound.
Five doctors Marie saw could offer no help. "Some of them told me it was all in my head," she says.
Finally, after four years, a urologist diagnosed her condition as interstitial cystitis (IC), a puzzling bladder disorder that's rare in men but affects thousands of women.
"Her frequent need to urinate made her virtually housebound"
"Interstitial cystitis is hard to diagnose because the symptoms resemble many other bladder conditions," says Simon Hill, Research Fellow in Uro-Gynaecology, King's College Hospital, London.
"Strictly accurate diagnosis requires a cystoscopy."
This test involves hospitalisation and a general anaesthetic; otherwise the doctor must rule out all other possible reasons for bladder symptoms, including common cystitis, kidney problems, certain sexually transmitted diseases and cancer.
The treatment Marie Grimes was given—heparin, most often used as an anti-coagulant, infused directly into the bladder, along with another medication taken orally—allayed her symptoms.
A variety of treatments is available to IC patients, but none is effective for everyone.

Coronary heart disease

woman suffering from chest pain due to coronary heart disease
Furniture shop owner Jackie Landreth, 49, awoke one night with a crushing chest pain that radiated down her left arm. She braved the pain until morning, then saw a GP who told her she looked healthy and sent her home with antacids for indigestion.
Seven hours later, Jackie's friend found her collapsed in her living room. She was rushed to hospital, where doctors determined she'd had a major heart attack. Tests showed that one of her coronary arteries was completely blocked.
Coronary heart disease (CHD) is the number one killer of women, claiming some 78,000 lives in the UK each year.
Britain has the highest heart disease rate among women in the world. And yet women with CHD symptoms are less likely than men with similar complaints to receive intensive evaluation and treatment.
"Britain has the highest heart disease rate among women in the world"
"Until five years ago, doctors associated heart problems mainly with men, and didn't recognise that women are prone to the same risk factors—smoking, obesity and diabetes," says Dr Diana Holdbright, cardiology research registrar at the London Chest Hospital.
Women typically have heart attacks later in life than men. The elderly in general are less likely to experience chest pressure or pain radiating to the left side and may have only "heartburn" or shortness of breath.
This makes it difficult for women and doctors to recognise coronary problems.
Jackie Landreth underwent angioplasty, the procedure that uses an inflated balloon-tipped catheter to widen clogged arteries.
Now, after completing cardiac rehabilitation, she has found ways to lessen stress and reduce fat in her diet.
In addition to beginning an exercise programme, she takes daily drugs and has regular evaluations by her cardiologist.
This article is part of our archival collection and was originally published in August 1994. While we strive to present historical content accurately, please note that circumstances and information may have changed since the article's original publication. Some individuals mentioned in the article may no longer be alive, and events or details may have evolved. We encourage readers to consider the context of the original publication and to verify any current information independently
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