Navigating Menopause with Hypermobility and Ehlers-Danlos Syndrome

Through my movement therapy and regular movement practice, I no longer had hypermobility-related pain and discomfort. But the perimenopause came with all sorts of triggers that appeared to be giving me new, uncomfortable symptoms and making older symptoms flare up again.

Almost overnight, pain returned to my joints and muscles, headaches and migraines took on a whole new level, and most distressing of all was experiencing repeated bladder infections and inflammation, that my GP was unable to help with. I was at a total loss physically and my mental health was taking a toll. But why did the menopause trigger my hypermobility symptoms?

What is menopause?

It literally means when your periods stop. Meno refers to the menstrual cycle and Pause refers to the cycle stopping. According to the Menopause Doctor, the average age of menopause in the UK is 51.  Although menopause is a normal event, some conditions can bring on an early menopause such as some autoimmune conditions, some genetic conditions, removal of ovaries, cancer treatments, and surgical procedures for things like endometriosis.

According to the National Institute on Aging, menopause is defined as a point in time 12 months after the last menstrual cycle. It is the point in time in which the follicle supply of the ovaries is depleted (1).

This transition occurs in stages (1):

• Late reproductive phase: There is a decline in the follicle reserve and the menstrual cycle may be normal or slightly irregular.
• Early menopausal transition: There is a greater than or equal to 7-day difference in the menstrual cycle accompanied by changes in hormone production but cycle and fertility are maintained.
• Late menopausal transition: No menstruation for 60 days or more. This usually lasts for 1-3 years and is accompanied by hormonal fluctuation and a fluctuation between cycles with and without ovulation, estrogen is more consistently low.
• Postmenopausal: When 12 months have passed since the last menses, the postmenopausal stage is entered. Estrogen continues to fall and will stabilize around 2 years after the last menstruation.

Symptoms of menopause include (1):

• Hot flashes
• Genitourinary symptoms: vaginal dryness, uterine prolapse, urinary incontinence, increased risk of urinary tract infection, atrophy of the vulva
  • This can also be associated with pelvic floor weakening. The declining levels of estrogen can cause these changes and many people with EDS/HSD already have issues here.
• Increased depression and anxiety
• Sleep disturbance that appears early in the menopause transition and peaks in the late transition
• Decreased libido
• Osteoporosis

 Hormones and EDS

Both research and my clinical experience indicate hormones play a big role in the levels of pain experienced by people with hEDS/HSD (1). There is often an increase in symptoms reported at puberty, during pregnancy, postpartum, and peri-menstrual indicating hormone fluctuations impact these conditions (2, 3). More research is needed to determine the role hormones are playing.

Of note, mast cells have receptors for estrogen and progesterone and these hormones are hypothesized to play a role in mast cell functionality (4, 5). For example, 30-40% of women with asthma experience worsening symptoms in the perimenstrual stage of the cycle  (5). Again, more research is needed to determine what interaction mast cells have in menopause and EDS/HSD.

If you have EDS/HSD, you may already have migraines. Women are 2-3 times more likely to suffer migraines than men. Hormone fluctuations, particularly estrogen levels, have been found to trigger migraines in some women. Migraines can become more common in peri-menopause and menopause as these hormones will naturally decline (Newson Clinic). Hormone replacement therapy can be helpful in alleviating the symptoms of migraines – please check with your doctor as to whether HRT would be suitable for you (1). It’s not for everyone.

How does EDS affect menopause?

The short answer is we don’t know. There is a lack of research on menopause in general – in fact, 99% of studies on the biology of aging don’t even consider menopause (6). You can imagine there is even less research on menopause in the context of EDS/HSD.

If you have hEDS/HSD you may experience symptoms including joint laxity, sprains, muscle stiffness, fatigue, SI joint pain, pelvic pain, and brain fog. I have found in my own experience and that of Navigating The Menopause support group in The Zebra Club this huge shift in hormones seems to make these symptoms worse.

In the general population (the hypermobility status was not addressed), menopause is associated with increased musculoskeletal pain, joint pain, and arthritis (7). While no studies have focused solely on midlife and aging with hEDS/HSD patients do report worsening of symptoms during and after menopause (8).

In one study of older adults with hEDS/HSD among the 23 participants who had gone through menopause, 60.9% reported worsening of symptoms, 0% reported an improvement, 17.4% reported no change, and 21.5% couldn’t remember (8). In another study of gynecologic symptoms in 386 people with hypermobile Ehlers-Danlos Syndrome, 16.8% were post-menopausal. Among those, 22% reported improvement in symptoms after menopause (2).

We know that anxiety is linked to hypermobility. During peri- and menopause, it can be very common to experience a change in how you feel – mood swings, anxiety, low mood, lack of interest in doing things.  I passed my driving test when I was 17, so I have been driving for a long time and yet I went through a period where I was scared to drive. I panicked whenever I got in the car and I had to gently ease myself back into it. This is where relaxation and breathing techniques can be really helpful.

 How should we adapt our exercise to manage this transition?

When we hit menopause, our energy, mood, and motivation levels may impact our desire to exercise. But the benefits of regular exercise are super important – it can improve cardiovascular health and loading the joints can be essential for avoiding osteoporosis.

Even more now, we need to focus on bone health, muscle mass, and healthy hearts.  It can also help with menopause weight gain – falling levels of estrogen can lead to a greater fat distribution around the waist.  Exercise is also proven to improve our moods and improve energy.  Even if you don’t feel up to a full workout, doing some gentle movements and breathing exercises can really help.

Here are my tips for exercising during this transition:

1. Breathwork to calm the nervous system. Try this video.
2. Mindful movements – slow and steady.
3. Gentle weight bearing to help maintain bone density and help with osteoporosis.
4. Training with bands and balls – but building up tolerance slowly.
5. Balance work to help prevent injury.
6. Stability works, but not through bracing or guarding the muscles.
7. Taking time to rest and restore.
8. Cardio – however gentle you need it to be – to maintain heart health. This may be a gentle walk, swimming, treadmill, or other things to raise the heart. Of course, if you have POTS or ME/CFS, we need to consider this too.

According to information provided by the clinics of the Menopause Doctor, there are other useful tips to consider for menopause management in addition to regular exercise.

• Eating a balanced diet with enough calcium to protect the bones – check my interview with Lorna Ryan and Bonnie Nasar on EDS Diets.
• Quality sleep and establishing good sleep hygiene (not always easy I know if you have night sweats like I did)
• Maintaining mental wellbeing and creating time for self-care.

I would also add this is a key time for introducing self-compassion if you do not already practice it.  It is a challenging transitional time in our lives.  I certainly experienced some level of grief and sadness.

It is only recently that the menopause has been publicly spoken about in the media and in public amongst friends. When my mother went through it, it was never discussed. I was actually quite afraid of it.  But now there is a great deal more information available and support. I’ve found speaking to other women in the Menopause group in The Zebra Club really helpful. It was so validating to hear that other women had also experienced the same as me. We share\ ideas, solutions, and our experiences. It is so much easier when you don’t feel alone. We have deepened our connections with each other through our shared experiences, fostering an even stronger sense of community.  Hypermobility and Ehlers-Danlos Syndrome can already make people feel isolated and not seen. The support network within The Zebra Club can really help when we need a little boost.

The menopause does bring many changes to an EDS/HSD body.  But it can also be seen in a positive light. It is not all doom and gloom.  It marks a wonderful new chapter in a woman’s life. We can celebrate our amazing journey and maybe begin to have more time for ourselves. This gives more time for self-care and personal health – always important for someone with EDS/HSD.

Menopause is a natural transition and a beautiful part of our journey.  We are resilient and we are zebrastrong!

You can learn more about managing menopause in this Podcast episode I did with my friend and menopause expert Dinah Simon

Literature Review and Research by Catherine Nation, MSc, PhD

Works Cited

1. Santoro et al (2021) The Menopause Transition: Signs, Symptoms, and Management Options. The Journal of Clinical Endocrinology & Metabolism.
2. Hugon-Rodin et al (2016) Gynecologic symptoms and the influence on reproductive life in 386 women with hypermobility type Ehlers-Danlos syndrome: a cohort study. Orphanet Journal of Rare Diseases.
3. Gensemer et al (2020) Hypermobile Ehlers-Danlos syndromes: Complex phenotypes, challenging diagnoses, and poorly understood causes. Developmental Dynamics.
4. Seneviratne et al (2017) Mast Cell Disorders in Ehlers–Danlos Syndrome. American Journal of Medical Genetics Part C (Seminars in Medical Genetics)
5. Zierau et al (2012) Role of female sex hormones, estradiol and progesterone, in mast cell behavior. Frontiers in Immunology.
6. Gilmer et al (2023) Female aging: when translational models don’t translate. Nature Aging.
7. Watt, Fiona (2018) Musculoskeletal pain and menopause. Post Reproductive Health.
8. Anderson, Linda (2023) Health-related quality of life in midlife and older women with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders. Doctoral Dissertation, University of Missouri – Columbia.