Living with Ankylosing Spondylitis as a Menstruator
I was diagnosed with AS when I was 14 years old, a much younger age than is the norm for its detection. It has been a difficult journey, simply trying to understand the disease, made worse by its combination with menstruations.
Menstruations are known to bring their own set of problems, like pains, cramps, fatigue, etc. Menstruating with AS is a different ball-game altogether. I have become hyper-aware of the various phases of my cycle, tracking them diligently to pinpoint when exactly my symptoms flare.
I’m 26 years old now, and the past 12 years have taught me that information about menstrual health is scanty at best, and absent at worst. There are studies if you dig deep and know what keywords to search for, but if you’re looking for information on AS and menstruation particularly, there’s not much you’ll find.
I’m making an attempt underneath to compile relevant information for menstruators living with AS, or people who know someone like that, looking for information on how the two conditions interact and what effects they produce.
According to Mayo Clinic, Ankylosing Spondylitis is an inflammatory disease that, over time, can cause some of the small bones in the spine (vertebrae) to fuse. This fusing makes the spine less flexible and can result in a hunched-forward posture. If ribs are affected, it can be difficult to breathe deeply.
AS can also cause inflammation, pain, and stiffness in other areas of the body such as the shoulders, hips, ribs, heels, and small joints of the hands and feet. Sometimes the eyes can become involved (known as iritis or uveitis), and — rarely — the lungs and heart can be affected.
The earliest symptoms of AS result from inflammation of the joints between the pelvic bones (the ilia) and the base of the spine (the sacrum). These joints are called sacroiliac joints, and inflammation of these joints is known as sacroiliitis. The inflammation gradually spreads to the joints between the vertebrae, causing a condition called spondylitis.
AS can involve other joints as well, including the shoulders, hips, and, less often, the knees. As the disease progresses, it can affect the joints between the spine and ribs, restricting the movement of the chest and making it difficult to breathe deeply. People with advanced disease are also more prone to fractures of the vertebrae.
According to John Hopkins Arthritis Centre, recent population estimates indicate that the prevalence of AS in the United States is approximately 0.2–0.5%. Based on data from multiple countries, the age- and sex-adjusted incidence of AS is 0.4–14 per 100,000 person-years. Prevalence of AS in the population increases to approximately 5% among patients who are HLA-B27 positive. AS occurs more frequently in men than in women (2:1). Age of disease onset usually peaks in the second and third decades of life. Approximately 80% of patients with AS experience symptoms at ≤ 30 years of age, while only 5% will present with symptoms at ≥ 45 years of age.
Now to understand how AS interacts with menstruations, we first need to understand how menstruation and the immune system are linked because AS is essentially an autoimmune disorder which presents chronic inflammation as one of its symptoms. Following is a brief note on how different phases of the menstrual cycle affect one’s immune response.
During the follicular phase of the menstrual cycle (i.e. the first part of the cycle, from the first day of the period until ovulation), people tend to have higher levels of antibodies in their body and have an increased inflammatory response. This increased immune response is thought to be partially triggered by rising estrogen levels that occur between menstruation until just before ovulation.
During most of the luteal phase of the cycle (i.e. the second part of the cycle, post-ovulation until the first day of the next period), the immune system is suppressed and much less likely to stage an inflammatory response. This suppression of the immune system during the luteal phase is associated with rising levels of progesterone and with cellular changes that influence testosterone.
In the few days preceding and throughout menstruation, inflammatory responses return, as levels of a hormone-acting lipid called prostaglandin increase. Although estrogen levels are low during this time, menstruation itself is associated with increased inflammation, though there is not a clear understanding of how or why. (The Immune System and Menstrual Cycle)
Autoimmune diseases, as is AS, are characterized by a disorder of the immune system with abnormal production of antibodies (autoantibodies) that are directed against the tissues of the body. They typically feature inflammation of various tissues of the body. This means, depending on the phase of the menstrual cycle, one’s symptoms could worsen, as per the level of antibodies present.
AS is also a chronic inflammatory disorder, meaning, there is persistent inflammation in joints. This inflammation could worsen with changes in the menstrual cycle, as the inflammatory response of the body increases or decreases.
Though there is no treatment for AS, physiotherapy and certain medications, like NSAIDs (Non-Steroidal Anti-inflammatory Drugs), biologics, etc., along with regular physical activity, such as walking, cycling, swimming, or other low-impact exercises, do work wonders on slowing the progression of this disease. My personal experience is, they also help with menstruations tremendously so its a two-birds-one-stone situation there.
Living with AS was not something I anticipated but things never go as planned. So, my next step is to record my experiences and hope they help folx like me who have been trying to solve this puzzle that is AS with menstruations. Hopefully, this piece has been insightful and has helped shed new light on the conundrum that is living with AS as a menstruator.
