Although we recognize that this section does not apply to everyone with POTS, given the sheer number of individuals with POTS who experience periods and the impact this can have on symptoms and flare-ups, we felt that it was important to dedicate a full section to this topic, and this topic alone! We must first emphasize that this is an area requiring significantly more research and funding; although the information on this page is taken from reputable and trusted sources, we are merely hypothesizing what we believe is behind added difficulties for those with POTS and other co-occurring conditions (like MCAS) during the menstrual cycle based on our reading. This page will continue to be updated in time, as more information becomes available.
Why is this topic so important?
It has been discovered that approximately 80-85% of individuals diagnosed with POTS had an assigned female gender at birth and are between the ages of 13 to 50, reinforcing the need for us to consider how POTS impacts menstruation (Garland et al., 2007). More striking are the significant symptom changes individuals with POTS can experience throughout their menstrual cycle as they experience various fluctuations in sex and pituitary hormones. Although not scientific, we asked our Instagram community in March of 2023 how menstrual changes have impacted their POTS severity, and the results and responses were quite striking.
What did our community share with us?
When asking our Instagram community how menstrual changes have impacted their POTS severity, the responses reinforced the significant changes in severity experienced at different points in their menstrual cycle. Words used to describe how their POTS impacted them included: “really bad,” “intensely,” “incapacitated,” “severely,” and “monumentally.” Some reported they are on birth control regimens that limit the frequency of their periods throughout the year, one reported significant improvements following a hysterectomy, and one individual reported needing time off from work given the severity of symptoms. Although we recognize that this data was not collected in a scientific fashion, and therefore can’t fairly be used to draw conclusions, we do believe it sheds light on a very critical and important difficulty for individuals who are menstruating and diagnosed with POTS.
What is the menstrual cycle?
The menstrual cycle refers to the hormone fluctuations that lead to bodily changes, allowing for the release of an egg and the growth of the uterine lining as the body prepares for a potential pregnancy. There are significant changes and fluctuations in both sex hormones (estrogen and progesterone) and pituitary hormones (follicle-stimulating hormone and luteinizing hormone) during this monthly cycle (though regularity can vary for individuals in our community, especially if they are navigating other conditions such as endometriosis or polycystic ovarian syndrome).
Why may these changes impact POTS severity?
As stated above, not enough research has been done making it irresponsible for us to draw any firm conclusions, but we do have a few theories that we can propose listed below:
Some individuals with POTS appear to be more susceptible to inflammation, especially given how some in our community experience worsening symptoms when navigating viral illnesses, or eating inflammatory foods such as gluten (Fedorowski, 2019; Zha et al., 2022). This may be related to the potential autoimmune, inflammatory, and immunological components that are believed to be associated with some forms of POTS (Fedorowski, 2019; Johansson et al., 2022).
Common triggers for individuals in our community with POTS which have been reported to worsen POTS symptoms, such as lack of sleep, inflammatory foods, and stress, are known to increase inflammation in the body (Maydych, 2019; Soares et al., 2013). Researchers have discovered that there are increased inflammatory markers, like C-reactive protein (CRP), when menstrual bleeding occurs (Gaskins et al., 2012).
When the body realizes that the egg is not fertilized, the sex hormones estrogen and progesterone begin to drop quite quickly and significantly. The decrease in progesterone stimulates the release of enzymes that leads to the breakdown of cells, releasing prostaglandins. This significant drop in progesterone appears to stimulate a large inflammatory process, as progesterone has been discovered to have an anti-inflammatory effect, and prostaglandins have been discovered to have an inflammatory effect (Barcikowska et al., 2020). It is understandable why added inflammation, driven by hormone fluctuations, may lead to worsening POTS symptoms during this time. It is important for providers to be aware of these patterns and what each individual experiences.
More will be added to this section as we unpack the research!
What can I do to prepare ahead of time and reduce severity?
It may be helpful to look at symptom changes as they relate to your menstrual cycle. This may vary from person to person, and may not be as easy when navigating diagnoses that can impact regularity, such as endometriosis and/or PCOS, but you may notice certain patterns that provide you with added insight that is beneficial for you.
Taking preventative steps if you know there are certain times of the month when you are more symptomatic, may be important. If you know that you usually experience flare-ups during your cycle, you could consider starting your flare-up protocol beforehand! For more help with this, see our Navigating Flare-ups website section.
We recommend communicating openly with others in your life who may be able to provide added support. If they also understand these patterns, they may be able to help you prepare proactively as well, and encourage you to pace.
Remember that fluctuations may occur, and you may notice that the severity worsens if you are already experiencing a flare-up, or if you have been exposed to more triggers (such as heat). It may be important to consider tracking all of these symptoms, triggers, and other components! We have developed a Symptom Tracker that you can download, personalize, and use! We also have a list of helpful symptom tracking mobile apps within our Helpful Apps section if that is a more convenient and better option for you.
