The Overlooked Connection: HSD/EDS and Pelvic Pain in Women
What is HSD and EDS?
Hypermobility spectrum disorders (HSD) and Ehlers-Danlos syndrome (EDS) are a group of hereditary disorders of connective tissue. People born with HSD/EDS have collagen and connective tissue proteins that are abnormal in structure or function. This leads to a wide range of signs, symptoms and conditions. The hallmark of HSD/EDS is hypermobility, which is defined as the ability of joints to move beyond their normal range of motion.
For dancers, athletes, musicians and gymnasts, this can actually be quite beneficial. Before my career in physical therapy, I trained in classical ballet for over 20 years. My hypermobility enabled me to move with greater flexibility and perform outstanding movements. However after I retired from ballet, things started to change. I started experiencing significant hip pain that no amount of stretching or massage seemed to alleviate. Around the time of my period, I would experience intense spasms of my vaginal muscles.
It wasn’t until I was a Doctor of Physical Therapy student, diving deep into pelvic floor anatomy and rehabilitation, that I recognized these symptoms for what they were — signs of pelvic floor muscle dysfunction. That connection between pelvic pain and hypermobility became even clearer once I began working full-time as a pelvic health physical therapist. I started seeing countless women with similar complaints: pelvic pain alongside multi-joint pain, instability, and frequent subluxations or dislocations. Some had formal diagnoses of HSD or EDS, while others had gone undiagnosed for years.
The Prevalence of Pelvic Pain in Women with HSD/EDS
Women with Hypermobility Spectrum Disorder (HSD) and Ehlers-Danlos Syndrome (EDS) have a high rate of pelvic floor disorders, with both conditions being highly prevalent in women with pelvic health impairments. A 2019 study by Hastings et al. found that 24% of women with chronic myofascial pelvic pain met the criteria for generalized hypermobility spectrum disorder (G-HSD). This group had significantly higher odds of experiencing dyspareunia (painful intercourse), low back pain, stress urinary incontinence, irritable bowel syndrome and hip pain compared to those without G-HSD. Ahlqvist et al. (2020) conducted a study involving over 2,200 pregnant women and found that those with self-reported generalized joint hypermobility had a higher prevalence of pelvic girdle pain (PGP), suggesting that hypermobility may be a risk factor for developing PGP during pregnancy.
These findings highlight the importance of screening for hypermobility in women experiencing pelvic health issues, as addressing this underlying factor can be crucial for effective treatment and long-term symptom management.
How do I know if I’m hypermobile?
A commonly used screening tool is the Beighton Index, which assesses joint hypermobility by measuring how far certain joints move beyond the typical range. It includes simple movements like bending your pinky back, touching your thumb to your forearm, or placing your palms flat on the floor with straight legs. Each movement is scored, and the total score helps determine if you may be hypermobile.
A physical therapist can safely perform this assessment, explain what your score means, and discuss how hypermobility might be affecting your posture, movement patterns or pelvic floor health.
What is the pelvic floor?
The pelvic floor consists of a complex system of muscles, fascia, ligaments, connective tissue and nerves. The pelvic floor muscles extend from the pubic bone at the front of the pelvis to the tailbone at the back, and from one sitz bone to the other, forming a supportive bowl, sling or hammock-like structure. This muscular foundation cradles the pelvic organs and contributes to core stability.
The pelvic floor also plays vital roles in bowel and bladder function, helping maintain continence and allowing for controlled urination and defecation. Additionally, it’s essential in sexual and reproductive health — supporting orgasm, facilitating childbirth, and allowing for comfortable penetration during sexual activity.
Pelvic floor dysfunction occurs when these functions are disrupted due to muscle weakness, excessive tension, poor coordination, or a combination of factors. Signs of pelvic floor dysfunction include urinary or bowel incontinence, urinary urgency or frequency, chronic pelvic pain, painful intercourse, difficulty emptying the bladder or bowels, and sensations of heaviness or bulging in the pelvic region.
Images used with permission from Pelvic Guru®, LLC as a member of the Global Pelvic Health Alliance Membership (GPHAM).
How does hypermobility impact the pelvic floor?
When someone has both hypermobility and pelvic floor dysfunction, it’s essential to consider how their connective tissue behaves differently from a typical person. Individuals with hypermobility have increased joint and tissue laxity, meaning their muscles, ligaments and fascia provide less structural support and tolerate force differently. This can lead to muscle overactivity, compensatory movement patterns, and chronic guarding in the pelvic floor muscles, including the muscles surrounding the pelvis such as the abdomen, low back and hips. As a result, people with hypermobility are more prone to developing pelvic pain conditions such as myofascial pelvic pain, pelvic girdle pain, vaginismus (tight vaginal muscles) and dyspareunia (painful sexual intercourse).
A surprising fact for many of my clients is that chronic low back, tailbone and hip pain can actually be signs of tight, overactive pelvic floor muscles. One analogy I like to use is that sometimes the source of your pain isn’t coming from the muscles you can easily stretch or strengthen — it’s coming from inside the house. In other words, internal pelvic floor dysfunction can silently drive persistent pain in nearby areas, and unless this underlying issue is addressed, those symptoms often linger despite traditional treatments like stretching, massage or strengthening exercises.
What are treatment strategies to manage pelvic pain?
Effective management of pelvic pain often involves a combination of physical therapy, lifestyle changes and sometimes medical interventions. Pelvic floor physical therapy (PFPT) is a first-line treatment strategy, helping to relax overactive pelvic muscles through techniques like manual therapy with a pelvic wand, dry needling, down-training exercises, postural re-training, biofeedback and pain neuroscience education (PNE). Other treatments may include behavioral therapy to address stress and nervous system dysregulation, medications for pain management, and working with other integrative health providers such as a functional medicine doctor, chiropractor, massage therapist or acupuncturist. A multidisciplinary approach tailored to individual needs is often the most successful way to alleviate symptoms.
Closing Thoughts
HSD/EDS and pelvic pain can have a profound impact on daily life, but you don’t have to navigate these challenges alone. Working with a pelvic floor physical therapist (PT) can help identify the root causes of your symptoms and develop a personalized treatment plan that addresses your unique needs.
If you’re experiencing pelvic pain, ask your healthcare provider for a referral to a pelvic floor PT, and be sure to explore providers in your area who specialize in pelvic health. The right support can make all the difference.
Ariana Lopez, PT, DPT, is an orthopedic and pelvic health physical therapist. She is the owner of Arlo Physical Therapy & Wellness, a private practice based in Minneapolis, MN, offering physical therapy consultations and dry needling services for adults at every stage of life. Ariana has a special interest in working with performing artists, individuals with hypermobility and Ehlers-Danlos Syndrome (EDS), and those navigating chronic pelvic pain conditions.
References:
Ahlqvist K, Bjelland EK, Pingel R, et al. The association of self-reported generalized joint hypermobility with pelvic girdle pain during pregnancy: a retrospective cohort study. BMC Musculoskelet Disord. 2020;21:474. doi:10.1186/s12891-020-03486-w
Hastings J, Forster JE, Witzeman K. Joint hypermobility among female patients presenting with chronic myofascial pelvic pain. PM R. 2019;11(9):974-980. doi:10.1002/pmrj.12131
van Reijn-Baggen DA, Han-Geurts IJM, Voorham-van der Zalm PJ, Pelger RCM, Hagenaars-van Miert CHAC, Laan ETM. Pelvic floor physical therapy for pelvic floor hypertonicity: a systematic review of treatment efficacy. Sex Med Rev. 2022;10(2):209-230. doi:10.1016/j.sxmr.2021.03.002
