While there are many types of arthritis, ankylosing spondylitis is not as well-known as the others. Arthritis tends to affect women more than men, except for several types such as AS. In the case of AS, this has nothing to do with men being more vulnerable to the condition. The problem is that this disease is often misdiagnosed in women, despite its serious effect on their lives. Read on to learn more about AS and how it affects women.

What is ankylosing spondylitis (AS)?

Ankylosing spondylitis (AS) is a type of arthritis characterized by inflammation in ligaments and joints of the spine. The disease may affect peripheral joints such as the hips, knees, and ankles. Inflammation associated with this chronic condition may cause stiffness in joints and tissues of the spine. Other symptoms[1] of AS include difficulty taking deep breaths (if ribs are affected), vision changes and eye pain due to uveitis (inflammation of the eye), fatigue, loss of appetite and weight loss, skin rash (especially psoriasis), and loose bowel movements or abdominal pain.

Also known as axial spondyloarthritis, the condition may manifest itself as pain and stiffness that people experience early in the morning or after longer periods of inactivity. With time, symptoms of AS may worsen, improve, or stop at irregular intervals. In the most severe cases, the disease may cause fusion of the vertebrae. When that happens, the spine becomes rigid or inflexible.

Causes and risk factors of ankylosing spondylitis

The exact cause of spondyloarthritis is unclear. However, people may have a genetic predisposition to develop this disease. Gene HLA-B27 is involved in the susceptibility for AS. Around 95% of people with AS[2] have this gene variation. That being said, most people with mutated HLA-B gene don’t develop this chronic illness, Cleveland Clinic reported. More research is necessary to elucidate all the underlying mechanisms associated with AS.

Risk factors for axial spondyloarthritis are the following[3]:

  • Being male
  • Early adulthood
  • Genetic predisposition and family history of AS
  • Intestinal inflammation
  • Mechanical stress (physically demanding tasks)
  • Smoking
  • Vitamin D deficiency
  • Childhood infections
  • Having Crohn’s disease, ulcerative colitis, or psoriasis

How does ankylosing spondylitis affect women?

Although this disease is primarily associated with men, women can develop it too. This type of arthritis affects the same joints in women as in men, but women are more susceptible to pain in the neck, knees, and ankles. Moreover, spondylitis symptoms females experience include being more prone to systemic symptoms associated with AS e.g. bowel inflammation.

The disease doesn’t affect women’s fertility and reproductive health. That being said, women who are pregnant or planning to conceive should consult their doctor or rheumatologist. Certain medications for AS such as non-steroidal anti-inflammatory drugs (NSAIDs) aren’t entirely safe during pregnancy. At the same time, symptoms of ankylosing spondylitis may continue during pregnancy, worsen, or remain stable. Pregnant women with this chronic illness may need a C-section because inflammation of the hips could make vaginal delivery more difficult.

How common is this condition?

Axial spondyloarthritis is a relatively rare condition that affects 0.1% to 1.4% of the global population, according to a study[4] from the April 2014 issue of Rheumatology. The same study showed that the prevalence of AS per 10,000 people is 23.8 in Europe, 31.9 in North America, 16.7 in Asia, 10.2 in Latin America, and 7.4 in Africa. These numbers could be higher because awareness of AS is also increasing. Evidence shows[5] the prevalence of AS in the United States is around 0.2% to 0.5% and increases to 5% among patients who are HLA-B27 positive. The ratio in the prevalence of AS in men versus women is 2:1.

According to a review[5] from the May 2018 issue of Current Rheumatology Reports, the prevalence of AS in men to women used to be 10 to 1, but recent research suggests it could be 1.03 to 1.

How long it takes to get a diagnosis of ankylosing spondylitis?

It may take several years to get a diagnosis of ankylosing spondylitis. While scans can show inflammation of the spine and ankylosis (fusing) of the spine, the extent of the damage is difficult to notice, especially in the early stages of the disease. For that reason, it can take a few years to receive the actual diagnosis. It is important to mention here that the disease is diagnosed in men earlier than in women. There is no specific timeframe during which AS is diagnosed. A paper from the Annals of the Rheumatic Diseases revealed[6] diagnosis may take four to nine years, but other studies showed[7] the time between the onset of symptoms and diagnosis is five to seven years.

Diagnosis of ankylosing spondylitis

Why Ankylosing spondylitis is often misdiagnosed in women?

The disease is often misdiagnosed in women because they tend to experience AS differently. In addition to main symptoms such as low back pain after a period of inactivity, women are more prone to peripheral symptoms too. Peripheral symptoms are the effects of the disease outside the spine. These include psoriasis, redness or soreness of the eyes, mouth sores, irregular nails, and abdominal pain.

The diagnostic process is also a factor in the misdiagnosis[8] of AS in women. Since there is no specific ankylosing spondylitis test, the doctor may order imaging tests such as X-rays or MRIs. The problem is that X-ray shows visible changes caused by AS in men, as the disease progresses, but not in women. In female patients, X-rays don’t change as often or as early. Even the use of MRI is tricky because it will detect changes only if the right kind of MRI is ordered. This test is usually ordered for the lumbar spine area, but it is necessary to do an MRI of sacroiliac joints to spot the changes caused by AS. In these areas, the changes are most visible. Failing to do an MRI in this specific area is an important reason for the misdiagnosis of this disease in women. Even in MRI, changes produced by AS are subtler in women than in men.

Issues with diagnosis[9] and appearance of symptoms those aren’t typical for AS lead to misdiagnosis e.g. women may be diagnosed with fibromyalgia and chronic back pain instead.

How does Ankylosing spondylitis affect a woman’s quality of life?

The impact of AS on women’s daily lives can be serious, especially when the disease is left untreated. The spondylitis symptoms females experience may lead to complications[10] such as reduced quality of life, difficulty sleeping, pain during the night, and fatigue. Other complications may include inflammation of the eyes, compression fractures, decreased lung capacity, and cardiac system problems.

The effect of spondyloarthritis on the daily lives of women also includes more disability. While women experience less radiographic damage, they may experience more symptoms that further affect their flexibility, range of motion, and overall quality of life. The severity of the symptoms, especially widespread pain, can take their toll on mental and emotional health. For that reason, women may develop anxiety or depression. More precisely, the disease can negatively affect both the physical and psychological functioning of women on a daily basis.

Quality of life among women is further reduced when they plan to expand their family. As mentioned above, the disease may attack the hips and make vaginal delivery difficult. Or medications used in the treatment of this condition may not be safe during pregnancy. The disease may affect personal life, social life, and work.

Fortunately, it is possible to improve the quality of life and increase the range of motion. This is achieved with a well-structured treatment program and lifestyle modifications.

Treatments for ankylosing spondylitis

Treatments for ankylosing spondylitis revolve around medications, physical therapy, and surgery. The main objective of the treatment is to alleviate pain and stiffness and reduce the risk or delay complications associated with this disease.

Medications used in the treatment of this disease include NSAIDs such as naproxen sodium (Aleve) and ibuprofen (Advil). They work by lowering inflammation, stiffness, and pain, all of which are common spondylitis symptoms females’ characteristics. A doctor may prescribe other medications to reduce inflammation if NSAIDs fail to provide relief. These include corticosteroids, a tumor necrosis factor (TNF) blocker/inhibitor, and interleukin-17 inhibitors.

Besides the abovementioned medications, patients often rely on joint supplements such as Flexoplex. However, make sure to read a Flexoplex review that describes the experiences of other people with AS and consult a doctor before giving it a try.

The goal of physical therapy is to alleviate pain while improving strength and flexibility. The exact maneuvers depend on the specific needs of each patient and may include exercises for a better range of motion and strengthening exercises for the back and abdominal region. Physical therapists may also focus on proper walking and sleeping positions.

Surgery is an uncommon approach for people with AS and it is only necessary for severe damage of a hip joint. Then, a patient needs a surgical procedure to replace[11] it. Patients with AS may also need kyphoplasty to correct a curved spine.

Severe damage hip joint

Frequently asked questions

What age does ankylosing spondylitis start in females?

The age of onset of ankylosing spondylitis in females is between 17 and 45 years of age, which is when this disease tends to occur in general according to Spondylitis Association of America[12]. Little is known about the onset of AS in women specifically due to scarcity of studies.

One of the older studies on this subject, published in February 1999, revealed[13] the average age of diagnosis of AS in women was 35.3 years whereas men tend to receive diagnosis at 34.3 years of age on average. The age of onset of this chronic disease doesn’t differ between men and women, but females tend to have a relatively longer delay in diagnosis, according to a paper[14] from the Current Rheumatology Reports.

It is worth noting that most people develop AS in their 20s and 30s, but the condition can affect all age groups. The average age of onset of AS worldwide in a study from the April 2022 issue of Rheumatology is 25.

Is there a test to confirm ankylosing spondylitis?

There is no specific ankylosing spondylitis test. Since there is no specific test for AS, this type of arthritis is difficult to diagnose. The reason there is no test to confirm AS is that there is still a lot to learn about it. At this point, knowledge about the underlying mechanisms of the disease is quite limited. Due to the limited insight into how AS works, it would be difficult to create a test that detects it.

A further research on this subject is necessary to gain more understanding of AS and develops diagnostic tests. Doing so would allow for faster diagnosis and better patient outcomes. However, just because there is no test to confirm AS, it doesn’t mean diagnosis is impossible. Healthcare professionals can rely on several other tests or factors to diagnose this condition and recommend the most suitable treatment approach to meet the specific needs of each patient.

What is the first test for ankylosing spondylitis?

The first ankylosing spondylitis test is the physical exam. The initial evaluation for the disease involves evaluating the range of motion in the spine. The doctor may also examine other joints for signs of arthritis. Moreover, the healthcare provider will check a patient’s eyes, hands, feet, and skin for signs that may point to the presence of the disease.

The main reason a physical exam is the first test for AS is because patients schedule an appointment to see a doctor for symptoms such as back pain and stiffness, fatigue, and pain and swelling in other parts of the body. Based on the symptoms described, a doctor starts with a physical exam first and orders other tests they deem necessary. The importance of physical exams goes beyond the diagnostic process. A doctor performs a physical exam during checkups to evaluate the progression of the disease and whether a patient responds well to the treatment program.

How is ankylosing spondylitis diagnosed in women?

Ankylosing spondylitis in women is diagnosed after a physical exam that is followed by imaging tests and lab tests. Although there is no specific diagnostic test for this disease, doctors may rely on several approaches to diagnose it. In addition to the abovementioned physical exam, the doctor may order imaging tests such as MRI. The choice of MRI is more suitable for women because X-rays do not show changes related to AS in women, but they can show them in male patients. MRI scans can show evidence of non-radiographic AS earlier in the disease process, but it tends to be pricier.

Lab tests in the diagnosis of this disease include a blood test that is analyzed for the human leukocyte antigen B27 (HLA-B27) gene. This specific gene is present in most people with AS. However, it is also possible for a person to have AS even without the presence of HLA-B27. Blood tests may also show markers of inflammation such as C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR). They are not the telltale evidence of AS because many health problems cause an inflammatory state. However, the doctor doesn’t rely on a single test to diagnose AS. Instead, they may perform several tests and take into account health and family history or the patient’s symptoms to diagnose AS.

Bottom line

The impact of ankylosing spondylitis on women and their quality of life deserves more attention. This is particularly because this condition in women is often misdiagnosed. Women can experience serious complications due to AS, which affect their functioning in all aspects of life. Living with pain, particularly widespread pain can be stressful and cause anxiety and depression.

The good news is that AS can be managed properly. Proper treatment can prevent or delay complications of this disease. Adhere to the doctor-recommended treatments, but also strive to adopt healthy lifestyle changes to manage AS.