Top 5 hEDS & HSD Considerations: Hormonal Cycles

Does your management of hypermobility consider the menstrual cycle?

 

Part 1 of the Top-5 Ehlers-Danlos Hypermobility Considerations discussed Stress & Anxiety and the impact adrenaline plays in symptom exacerbation. Part 2 takes into consideration hormonal cyles in the body, namely those involved in the female menstrual cycle.

While working with women in various stages of rehabilitation and high performance, Move Daily’s co-founder Fréyja noticed a pattern between increased pain and/or risk of injury around their hormonal cycles. It further led her to observe that her own sickness and extreme subluxations (affectionately termed “Baby Giraffe Syndrome” to make light of a painful situation) followed cyclical patterns when regular, as well as increased physical traumas when amenorrheic. This led her to consult colleagues and specialists, and to explore whatever research was available regarding the menstrual cycle's link to increased laxity and pain.

NB: In this post we are not intentionally ignoring men; the androgenic male hormonal profile is by nature more protective of collagen, and thus hormonal considerations are far more important for women.

Limitations

Research on the menstrual cycle in relation to pain sensation and/or athletics is limited and is an area of science that is gaining in attention as of late. That said, it has much catching up to do relative to our understanding of other aspects of health. Many larger scale studies are unable to account for the wide array of variables involved and use a survey-style data set which is inherently limited by participant recall. Smaller-scale studies that attempt to account for as many variables as possible have limited participant numbers- due in large part to the cost and inclusion/exclusion factors - and will run for shorter durations which is limiting when trying to track changes (ex: 8 weeks is only two menstrual cycles for the "average" cycle length).

  • The link between hormones and pain sensitivity is documented though complex and variable.
  • The link between hormones and athletic success is also complex and variable: some athletes report feeling great after ovulation whereas others are at their lowest during this time. Progesterone, which climbs after ovulation, has been heralded as being "energizing" while also being a depressant so it's no surprise that women and coaches alike get confused. Clinically, the hEDS population reports more physical pain and joint instability after ovulation as HR and temp climb (i.e in the luteal phase).
  • Hormonal Contraceptives (inclusive of the pill and hormonal implants) do not "balance hormones" in a way that mimics our cycle- they flatline them (this isn't a knock on BCPs and there's a time and place for a doctor to make the recommendation for one). Thus, taking any hormonal contraceptives results in Pill Bleeds rather than Periods: This distinction is crucial for patients to understand and take into account when tracking their cycle and symptoms.
  • There are four key phases to a normalized 28 day menstrual cycle with Ovulation as the key event of an ovulatory menstrual cycle which initiates the climb of progesterone in hormonal contraceptive-free women.

While some research may conclude that the impact of either birth control or the drug-free phases of the menstrual cycle is "not statistically significant" for performance markers across all participants, it is important to understand that tracking your cycle, being aware of your baseline health, and discovering your own patterns will unlock the answers you need to manage this part of your physiology and flare cycles. As much as it can be tempting to think that suppressing a cycle with medication will rid one of all pain and flare issues, we have yet to meet an hEDS or HSD client for which this has worked. Learning to optimize your baseline health to then manage your outputs accordingly will put you in control of better management. Research does agree on one thing: the best decisions are made when an individualized approach is taken.

Hormonal Cycle Training & Hypermobility

Research on the link between the female hormonal cycle and joint laxity has centred largely around athletic populations. For hormonal contraceptive users, there is limited evidence suggesting the withdrawal phase might be a time where reducing load or intensity of prescribed exercise is advised to mitigate damage. For hormonal contraceptive-free athletes, there is a general consensus that timing matters.

The risk of ACL injury is reportedly two to eight times higher for women than it is for men and tendon laxity increases up to 8.7% during week 3 of the female hormonal cycle: the ovulatory phase, a time of declining estrogen levels and climbing progesterone.

As one such study notes, “A reduction in [Musculotendinous Stiffness] results in greater reliance on reflexive response from the contractile components of the muscle due to a decreased contribution from passive elastic structures and will also increase electromechanical delay...the contractile components cannot respond quickly enough to counteract these sudden and potentially damaging forces.”

As a result of research and anecdotal evidence, adjustments for training peaks as well as strategies to mitigate injury risks have been made by coaches and therapists alike with particular attention to reduce stressors around time of ovulation. The conclusions, however, are ever more relevant for women suffering from musculoskeletal and chronic pain syndromes (such as hEDS) who live with a baseline of higher joint laxity, lower proprioception, and whose "performance" is daily life.

Figure From The Effects of Estrogen on Tendon and Ligament Metabolism : A schematic of possible modes of interaction between estrogen and T/L tissue. These mechanisms might affect different traits of tendon biology in diverse ways, thereby facilitating the changes observed in clinical studies.

Although most studies focus on the ACL and Achilles tendons, estradiol receptors are present within many structures (as reviewed by D.R Leblanc et. al), including organs, joints, skin, and cartilage. As such, fluctuations of estrogen and progesterone levels within hormonal cycles can impact the integrity of these tissues which, in the case of people with hEDS or HSD, already express reduced resilience and laxity. In the direct context of a hypermobile population, Prof. Howard Bird has noted an association between the onset of menstruation (lower estrogen, higher progesterone), and a self-reported increase in symptoms (joint pain, dislocations, etc.). There is additional evidence suggesting that Progesterone-based contraceptives can further worsen symptoms.

"It is surprising how frequently hypermobility, which was only slightly worse at the time of normal unmodified menstruation, becomes significantly worse with certain contraceptive pills, especially those containing progesterone alone or with progesterone depo contraception preparations or with mechanical devices impregnated with progesterone...In general, patients with hypermobility are safer avoiding injectable progesterone and progesterone impregnated devices. They might also be better avoiding contraceptive pills that contain progesterone derivatives alone." - Prof. Howard Bird

Dr. Natalie Blagowidow discusses the effects of contraceptives on dysmenorrhea and painful bleeds, noting that in a 386 participant study by Hugon-Rodin, there was no conclusive result that worked for all women. Many contraceptives carry side effects such as anxiety, depression, headaches, and dizziness which should be taken into consideration given the natural predisposition for the same issues within the hEDS or HSD populations. Anecdotally, implanted devices like IUDs and NuvaRings have the potential to create a mechanical stress that leaves many women with hEDS or HSD reporting worsening pain, bleed, or GI symptoms. Lastly, we would be remiss not to mention that the inflammatory nature of implanted devices can aggravate an already very sensitive immune system.

“For many years people have referred solely to the menstrual cycle. But now, because the day of ovulation can be accurately dated…there is also mention of the ovulation cycle…the better phrase, certainly when it comes to regulatory events, is the ovulation cycle” - Wilson & Rennie “The Menstrual Cycle”

Most women would agree that they experience changes in sleep patterns, energy, mood, etc. leading up to their cycle though it is not often discussed unless there's something blatantly wrong. Hormones are what make us tick, they help us regulate countless processes, they respond to the environment we put them in, and they keep us as resilient as possible as the key communicators within all of our body's tissues.

Women with hEDS and HSD already deal with regular day-to-day challenges and dealing with cyclical "flare" symptoms- much of which relate to hormonal cycles- often wreak the most havoc. Tracking 3-6 months of your main symptoms in addition to your hormonal cycle can help you figure out if there's a meaningful pattern at work.

Summary & Questions to Consider

It is important not to forget that hormones are vitally important to a woman's long term health, bone density, thyroid health, metabolism, and more. Gaining an understand of your personal rhythms and what inputs positively impact your physiology will empower you to be able to handle your flares and associated symptoms more readily.

 

 

  • If you are on a contraceptive that you feel is worsening your symptoms, speak with your doctor about alternative birth-control methods.
    • Recall that hormonal contraceptives with a withdrawal phase results in a Pill Bleed rather than a period. If you're making changes to go off of a pill, track symptoms for 3-6 months to get a better idea of what your overall picture is like as your body restores its own rhythms.
    • Adjusting back to an ovulatory menstrual cycle can take time if you've been on the pill for a long time: work with your physician or medical professional.
  • If you are amenorrheic, you may be living in a state of consistently low estrogen & higher progesterone which can further exacerbate hEDS & HSD symptoms.
    • Again, it is worth speaking to an allied health care provider that can address the underlying cause; things like high stress, emotional wellbeing, nutrition, under-eating, and over-training/over-working all play significant roles in amenorrhea.
    • Hormonal contraceptives do not restore a lost period defined by an ovulatory cycle (see above re Pill Bleeds).
  • Does your "flare" typically start with the same systems being affected?
    • If so, track the timing between the flare and your period. This can help you put steps in place to pre-empt the onset of symptoms when you have a better idea of when they typically occur. As an added bonus, doing this can also reduce stress and fear around your symptoms (which in-and-of-itself plays a role in making things worse).
    • The luteal phase is typically a 14 day stretch before your period, regardless of cycle length. This is typically when hEDS & HSD people need to reduce their physical load/intensity though benefit greatly from continuing to move in order to manage pain and instability.
    • hEDS & HSD people with Cranial Cervical Instability (CCI) anecdotally note worsening neck pain and instability around ovulation. This is a time to avoid ballistic exercises (think running, jumping, hopping), long drives, bumpy roads, static hunched postures, and reduced sleep.
  • Avoid taking on excessive physical or mental stress around ovulation
    • Most clients will report feeling better able to handle their schedules and physical symptoms when they have a plan in place to manage them. If you know that a high stress time is coming up and aligns with your typical flare, taking extra steps to manage stress will go a long way.
    • While you cannot always control what happens, you can control the tools you lean on to manage your flares.
  • Get outside and move gently within your capacity.
    • Changing your stimulus and increasing blood flow to other parts of the body can reduce pain and symptoms.
    • Muscles are an endocrine organ: Moving them causes the release of myokines (cytokines) that can promote pain tolerance, mood boosting effects and more.
    • Check out the hEDS & HSD Movement blog for ideas on deconstructing your movement into small doses.
  • Consider lowering any potentially inflammatory foods from your diet.
    • Fatigue can elicit cravings for sugar and quick-energy foods, which can increase inflammation and make symptoms worse: This is a matter of "total load" with multiple sources contributing to inflammation in the system.
    • Do not underestimate the importance of having a healthy GI particularly if you also have MCAS.
    • There are no magic foods that can directly change your hormone levels (despite widespread false claims on social media platforms).
    • Prostaglandins are a key part of our inflammatory process though too many can lead to more painful periods. If you view inflammation within the context of total load, it will benefit you to remove other inflammatory inputs such as sugar and highly processed foods.
    • Managing GI symptoms, eliminating any processed foods, and focusing on high-nutrient foods carries long term impact on your baseline health and will greatly contribute to menstrual cycle & flare management.

When it comes to hormonal cycles and hEDS or HSD symptoms, the impact is more widely recognized now than just a few years ago. Today, we see more people taking a "whole systems" approach when making adjustments, paying attention to mental health, gut function, stress levels, nutrition, sleep patterns, etc. With a little understanding of what serves your body best while managing the other considerations, you can work with your hormones to understand their role in symptom development.

We encourage patience in this realm particularly if you've previously experienced difficulty with your cycle. It takes time to sort out what stressors might be influencing your menstrual cycle (environmental, mental, and physical), which symptoms are "random" hEDS or HSD accidents, and which ones are truly cyclical. Further to that, the willingness to try various management strategies can take time but it's worth the process.

Keep reading the Top-5 Ehlers-Danlos Hypermobility considerations with Part 3: Digestive Health!