Women’s Health Issues in Hypermobility

Disclaimer:

• This information is intended as general advice only and does not replace individual medical guidance. Consult your medical professional to determine the best approach for your specific needs.

• While Not Just Bendy does not have a certified women’s health physiotherapist, our team can assist clients with screening, advice and general pelvic health exercise programs for hypermobility-related pelvic health issues. We can also guide you toward appropriate care pathways if you present with more complex conditions (e.g. referral to a women’s health physiotherapist or urologist). Find out more about all the services we offer here.

Introduction

Research indicates that the incidence of common women’s health complaints is doubled in the Hypermobility Spectrum Disorders (HSD) and Ehlers Danlos Syndrome (EDS) population compared to the general population. At Not Just Bendy, we frequently support individuals navigating these interconnected challenges. These include:

Bladder Issues

Urinary Incontinence

• Key terminologies & definitions:
  • Stress Incontinence – Leakage of urine during activities that increase abdominal pressure, such as coughing, sneezing, laughing, running, or lifting. This occurs when the pelvic floor muscles and sphincter are too weak to keep the bladder closed.
  • Urge Incontinence – A sudden, strong need to urinate, often resulting in leakage before reaching the toilet. This happens when the bladder contracts involuntarily, even when it isn’t full. It’s commonly linked to an overactive bladder and can be triggered by running water, cold weather, or key-in-the-door syndrome (an urgent need to urinate upon arriving home).
  • Common symptoms & causes:
    • Common symptoms include leakage of urine, increased urgency, or increased frequency of urination
    • The symptoms may be caused by poor pelvic floor musculature control, bladder sensitivity, poor emptying habits and connective tissue laxity.
  • In Children:
    • Up to 50% of primary school-aged children with HSD/EDS experience daytime leakage.
    • Studies show a higher prevalence of both day and night incontinence and recurrent urinary tract infections (UTIs) in girls with hypermobility

Urinary Retention

• Definition: Difficulty fully emptying the bladder, often related to neurological issues.
• In rare and severe cases this may may require self-catheterisation.

Urinary Tract Infections (UTIs)

• Women with HSD/EDS often experience atypical UTIs.
  • Research by Khullar et al. (2019) on 200 women with hypermobility and UTI symptoms found:
    • Research (Khullar et al., 2019) found only 10% of symptomatic women with hypermobility had a positive urinalysis, compared to 90% in the general population.
    • This suggests that standard UTI tests may not be reliable for people with hypermobility. In such cases, a full urine culture may be needed for an accurate diagnosis.
  • Mast cell activation in HSD/EDS may cause interstitial cystitis/bladder pain or UTI-like symptoms, even with minimal bacterial growth.
  • Local or oral mast cell stabilisers may help manage symptoms in these cases.

Bowel Issues

Individuals with Hypermobility Spectrum Disorders (HSD) and Ehlers-Danlos Syndrome (EDS) commonly experience bowel issues. These may include constipation, diarrhoea, and irritable bowel syndrome (IBS).

Constipation or Faecal Loading

Constipation is particularly prevalent in people with hypermobility due to weakened intestinal walls and reduced gut motility, leading to slow intestinal transit and delayed gastric emptying (gastroparesis) or accelerated gastric emptying (dumping syndrome).

Faecal loading refers to a build-up of stool in the colon, often from ongoing or incomplete constipation. The bowel can become stretched and sluggish, causing bloating, pain, and even overflow diarrhoea.

Importantly, you can be “chock full of poo” and still have regular bowel motions or diarrhoea, as only the looser material may pass around the impacted stool.

Several factors can contribute to constipation, including:

• Slow gut transit time – Food moves sluggishly through parts the digestive system.

• Connective tissue laxity – Weakness in the smooth muscle and intestinal walls can impair peristalsis (the involuntary muscle contractions that move food through the gut).
• Pelvic floor dysfunction – Overactivity or incoordination of pelvic muscles can make bowel movements difficult.
• Dietary intolerances – Sensitivities to certain foods (e.g., dairy, gluten, high-histamine foods) may contribute to bowel irregularities.
• Inadequate water intake – Dehydration can result in dry, hard stools.
• Low or excessive fibre intake – Both insufficient and excessive fibre intake can exacerbate constipation.
• Medications – Certain drugs can reduce gut motility, including iron supplements, opioids (e.g., codeine), and tricyclic anti-depressants (e.g. amitriptyline/Endep)

Anal Incontinence

Anal incontinence, or loss of bowel control can also affect those with HSD/EDS. It may range from occasional leakage (of wind, faecal urgency or soiling) to complete loss of control. Contributing factors can include:

• Weak Pelvic Floor & Sphincter Muscles
  • Connective tissue laxity can weaken the internal and external anal sphincters, reducing their ability to contract effectively and maintain continence.
  • Pelvic organ prolapse or rectal prolapse may contribute to impaired bowel control.
• Nerve Dysfunction & Dysautonomia
  • Individuals with Postural Orthostatic Tachycardia Syndrome (POTS) and dysautonomia may experience delayed nerve signalling, leading to reduced awareness of bowel movements or impaired rectal sensation.
  • Autonomic nervous system dysfunction can also disrupt the reflexes responsible for continence.
• Slow Gut Transit & Chronic Constipation
  • Chronic constipation may cause stretched rectal tissues and damaged nerves, leading to overflow incontinence (when loose stool leaks around impacted faeces).
  • Weak rectal muscles may impair bowel emptying, contributing to faecal retention and leakage.
• Mast Cell Activation Syndrome (MCAS) & Food Sensitivities
  • MCAS, often seen in individuals with HSD/EDS, can lead to frequent diarrhoea and bowel urgency, overwhelming the weakened anal sphincter.
  • Certain foods, particularly histamine-rich or inflammatory foods can trigger bowel dysfunction and worsen symptoms.

Pelvic Organ Prolapse

Pelvic organ prolapse is a common issue in individuals with HSD/EDS. Due to the underlying connective tissue laxity, the structural support that normally holds the pelvic organs in place can weaken, resulting in the descent or bulging of one or more pelvic organs into the vaginal or rectal area. Additional factors include:

• Pelvic Floor Dysfunction: Poor muscle coordination or weakness.
• Hormonal Changes: Pregnancy, menopause, or hormone therapies can worsen symptoms.
• Constipation and Straining: Frequent straining increases pressure on the pelvic floor.
• Childbirth Trauma: Vaginal deliveries, especially with forceps, may weaken tissues.
• High-Impact Activities: Running or heavy lifting can accelerate pelvic floor dysfunction.

Types of Pelvic Organ Prolapse

• Cystocele: Bladder bulges into the vaginal wall.
• Rectocele: Rectum bulges into the vaginal wall.
• Uterine Prolapse: Uterus descends into the vaginal canal.
• Enterocele: Small intestine protrudes into the vagina (often post-hysterectomy).

Symptoms

• Pelvic heaviness, pressure, or fullness
• Visible bulging in the vaginal or rectal area
• Urinary incontinence or difficulty urinating
• Constipation or incomplete bowel movements
• Discomfort during intercourse (dyspareunia)

Period Issues

Effects of the Hormonal Cycle:

• Hormonal fluctuations can exacerbate hypermobile symptoms.  In the days prior to menstruation, dropping oestrogen levels and rising progesterone may increase POTS symptoms and ligament laxity. This may lead to increased joint instability, migraines, headaches, incoordination and dizziness. Difficulty finding appropriate hormone-based birth control medications. Individuals with hypermobility may struggle to find suitable hormonal contraceptives. Some contraceptives may negatively impact joint laxity, vascular integrity, or trigger mast cell activation.
• Progesterone-only contraceptives (e.g., mini-pill, IUD)can increase joint laxity and worsen dysautonomia symptoms.
• Third-generation pills like Yaz/Yasmin can worsen POTS and MCAS in some individuals. This is because due to oestrogen, drospirenone (a synthetic progestin), and their effects on blood volume, electrolyte balance, and circulation.

Heavy or Prolonged Periods:

• Menorrhagia (heavy bleeding) and prolonged periods are common in those with hypermobility due to a combination of factors such as connective tissue dysfunction, MCAS, blood clotting abnormalities, and hormonal influences.
• Some women with HSD/EDS experience uterine prolapse or dysfunction, contributing to irregular shedding of the endometrial lining and longer periods.
• Coagulopathy (abnormal blood clotting)is a common issue with EDS patients, leading to excessive bleeding or easy bruising. During menstruation, the body naturally releases heparin (an anti-coagulant) to facilitate smooth shedding of the uterine lining. However, individuals with EDS may overproduce heparin, preventing proper clot formation, and resulting in excessive blood loss.
• Mast cells store and release heparin, which prevents blood clotting. Some people with MCAS and EDS have persistently elevated heparin levels, leading to prolonged or irregular bleeding, easy bruising and spontaneous bleeding.

Endometriosis

• Studies have found that joint hypermobility is more common in women with endometriosis, particularly in the later stages of the disease (Rani & Kumar, 2020). However, more research is needed to fully understand the relationship between the two conditions.

Other Management Considerations

Given the complex, multi-system nature of EDS and HSD, it’s important to look beyond pelvic symptoms alone. Effective care often requires a more holistic approach — one that considers contributing factors like nutrition, hormonal cycles, comorbidities, and tailored exercise.

Here are some additional considerations for managing pelvic and hormonal symptoms in hypermobility:

• Diet and nutrition: Consider consulting a dietitian if you have known or suspected food sensitivities, bowel irregularities, or MCAS symptoms that may affect digestion and inflammation.
• Specialist assessment: Persistent or severe pelvic symptoms may require input from a gynaecologist, urologist, or gastroenterologist familiar with connective tissue disorders.
• Women’s health physiotherapy: These professionals can perform internal assessments and deliver specific pelvic floor treatments that general physiotherapy does not cover.
• Managing comorbidities: Addressing co-existing issues like MCAS or POTS may relieve pressure on your pelvic system.
• Understanding hormonal impact: Be aware that cyclical hormone changes can influence laxity, pain, and fatigue — and adjusting your management accordingly may improve symptoms.

How Can We Help At Not Just Bendy?

Our Physiotherapists Can:

• Screen for gynaecological and pelvic health issues and provide tailored advice based on your clinical presentation.
• Use real-time ultrasound imaging to visualise the pelvic floor, bladder, and surrounding pelvic muscles.
  • This allows us to observe and assess the quality of muscle contraction and relaxation.
  • If no movement is detected, it may suggest either weakness or overactivity of the pelvic floor muscles.
• Assess your pelvic alignment and design a personalised home exercise program to strengthen surrounding muscles, supporting pelvic floor relaxation and function.
• Review your bladder and bowel diary to gain insights into patterns and contributing factors to your symptoms.
• Administer the Australian Women’s Pelvic Floor Questionnaire to explore any complex or multi-faceted pelvic health issues in more detail.
• Refer you to a women’s health physiotherapist and/or other relevant health professionals with experience in hypermobility and EDS where needed (e.g., a women’s health physio for specialised pelvic floor assessment, or a dietitian to evaluate whether food sensitivities may be affecting your symptoms).

Our Exercise Physiologists Can:

• Provide safe, women’s health-informed exercise programs that support pelvic health and overall wellbeing — particularly helpful for those managing conditions like endometriosis, bladder or bowel issues, or general hypermobility-related concerns.
  
  

This article has been compiled by the Not Just Bendy team based on current research and clinical experience in managing hypermobility-related pelvic and women’s health issues. Click here to learn more about the services we offer.

Learn More

• Hypermobility Brisbane Physiotherapy & Exercise Physiology
• Mast Cell Activation Disorders
• Postural Orthostatic Tachycardia Syndrome (POTS)
• Exercise Tips for Postural Orthostatic Tachycardia Syndrome (POTS)
• Hypermobile Hips
• Hypermobility Resources
• Hypermobility Brisbane Physiotherapy
• Hypermobility Screening & Prevention

References

• Afrin, L. B., Dempsey, T. T., Rosenthal, L. S., & Dorff, S. R. (2019). Successful mast-cell-targeted treatment of chronic dyspareunia, vaginitis, and dysfunctional uterine bleeding. Journal of Obstetrics and Gynaecology, 39(5), 664–669. https://doi.org/10.1080/01443615.2018.1550475
• Castori M, Morlino S, Dordoni C, Celletti C, Camerota F, Ritelli M, Morrone A, Venturini M, Grammatico, P, Colombi M. 2012. Gynecologic and obstetric implications of the joint hypermobility syndrome (a.k.a. Ehlers–Danlos syndrome hypermobility type) in 82 Italian patients. Am J Med Genet Part A. 158A:2176–2182.
• De Kort, L. M., Verhulst, J. A., Engelbert, R. H., Uiterwaal, C. S., & de Jong, T. P. (2003). Lower urinary tract dysfunction in children with generalized hypermobility of joints. Journal of Urology, 170(5), 1971–1974. https://doi.org/10.1097/01.ju.0000091643.35118.d3
• Khullar, V. (n.d.). Disorders of bladder function in hypermobile EDS [Zoom lecture]. YouTube. https://www.youtube.com/watch?v=bqqRQYCvOkI
• Ognenovska, S., Chen, Z., Mukerjee, C., Moore, K. H., & Mansfield, K. J. (2021). Bacterial colonization of bladder urothelial cells in women with refractory detrusor overactivity: The effects of antibiotic therapy. Pathogens and Disease, 79(2). https://doi.org/10.1093/femspd/ftab031
• Rani, G., & Kumar, A. (2020). Cross-sectional analysis of joint hypermobility in women with endometriosis. Journal of Chemical Health Risks, 10(4), 371-377. https://jchr.org/index.php/JCHR/article/view/5363
• Walsh, K. H., & Moore, K. H. (n.d.). Publications by Professor Kate Hilda Moore. University of New South Wales. https://research.unsw.edu.au/people/professor-kate-hilda-moore/publications?page=0
• Blagowidow, N. (2021). Obstetrics and gynaecology in Ehlers-Danlos syndrome: A brief review and update. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 187(4), 593–598. https://doi.org/10.1002/ajmg.c.31945
• Patel, M., & Khullar, V. (2021). Urogynaecology and Ehlers–Danlos syndrome. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 187(4), 579–585. https://doi.org/10.1002/ajmg.c.31959