Hypermobility signs common in women with pelvic pain, study finds

Pelvic pain and sexual health problems are common among women seen for genito-pelvic pain who had signs of joint hypermobility, including those with hypermobile Ehlers–Danlos syndrome (EDS), a study found.

Women with hypermobile EDS (hEDS), hypermobility spectrum disorder (HSD), or other hypermobility features had notable rates of endometriosis, diagnosed or suspected hip labral tears, symptoms linked to postural orthostatic tachycardia syndrome (POTS), which causes an abnormal rise in heart rate when getting up, and symptoms associated with an immunological condition called mast cell activation syndrome (MCAS).

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“This study emphasizes the need for universal screening for hypermobility features in women with genito-pelvic pain to facilitate early diagnosis and intervention,” the scientists wrote.

The study, “Characterizing sexual dysfunction in females with hypermobile Ehlers Danlos syndrome or hypermobility spectrum disorder and genito-pelvic pain through cross-sectional analysis,” was published in Rheumatology International.

EDS is a group of inherited connective tissue disorders characterized by overly flexible joints, fragile tissues, and unusually stretchy skin. The most common type of EDS is hEDS. People with joint hypermobility who do not meet all diagnostic criteria for hEDS are classified as having HSD.

Both hEDS and HSD can cause chronic pain, joint dislocations, and physical limitations. They may also be associated with problems in the pelvic floor, the muscles and ligaments that help support pelvic organs such as the uterus and bladder, as well as pelvic pain, pain during sex, and sexual dysfunction. In addition, past research showed that women with hEDS or HSD experience a higher rate of vulvodynia, or pain in the vulva (the area around the outside of the vagina), relative to women in the general population.

However, there are currently no specific guidelines for screening genital or pelvic pain disorders in women with hEDS or HSD.

Here, researchers assessed sexual dysfunction among people with genito-pelvic pain who also had signs of joint hypermobility or a diagnosis of hEDS or HSD. A total of 737 patients were screened, and 122 were classified as screening positive for hypermobility features, including some with a preexisting diagnosis of HSD. Another 327 screened negative, and after exclusions, 306 were included in the control group.

More than half met hEDS criteria

Among those who screened positive, 81 patients (mean age 33.8) underwent a detailed evaluation for hEDS. A total of 44 (54.3%) met the diagnostic criteria for hEDS.

Nearly all patients in the hypermobility group (97.5%) had provoked vestibulodynia, or pain at the opening of the vagina triggered by touch or pressure.

Pelvic floor dysfunction, in which the muscles supporting the pelvic organs do not relax or work normally, was found in 91.4%. Pudendal neuralgia, a form of pelvic pain caused by irritation or damage to the pudendal nerve, was identified in 40.7%.

Among the 79 hypermobile patients with provoked vestibulodynia, 31.6% (25 patients) had pain limited to the back portion of the vaginal opening. According to the researchers, this may indicate hypertonic pelvic floor dysfunction, in which the pelvic floor muscles remain overly tight and have difficulty relaxing. The remaining 68.4% (54 patients) had pain throughout the vestibule — the tissue surrounding the vaginal opening.

Among these 79 hypermobile patients with provoked vestibulodynia, 25.3% had been diagnosed or were suspected of having tears in the cartilage that helps stabilize the hip joint, called hip labral tears, whereas 24.1% had diagnosed or suspected endometriosis, a condition in which tissue similar to the lining of the uterus grows outside the uterus.

More than half of these patients had experienced symptoms associated with MCAS (57%), in which immune mast cells release excessive amounts of inflammatory chemicals. Another 54.4% reported symptoms linked to POTS.

Specifically among the 44 patients with hEDS, the rates of provoked vestibulodynia (100%), pelvic floor dysfunction (93.2%), and pudendal neuralgia (43.2%) were high. About three-quarters (77.3%) reported symptoms linked to POTS, and 75% reported symptoms associated with MCAS.

Sexual distress high across groups

Sexual function was assessed using the Female Sexual Function Index (FSFI). Average scores were 13.9 among women with hEDS and 14.6 among those with HSD or hypermobility features, indicating sexual dysfunction in both groups.

Sexual distress was also high. Average scores on the Female Sexual Distress Scale (F-SDS) were 33.1 in the hEDS group and 32.7 in the hypermobility group, well above the cutoff of 11 that indicates distress. For reference, the control group — patients who screened negative for hypermobility — had an average FSFI score of 15.3, while their average sexual distress score was 29.9.

Rates of vestibulodynia, pelvic floor dysfunction, pudendal neuralgia, vaginal yeast infections, and probable painful bladder syndrome also did not differ significantly among women with hEDS, those with HSD or hypermobility features, and those who screened negative for hypermobility.

However, rates of probable hip labral tears, diagnosed or suspected endometriosis, symptoms linked to POTS, and symptoms associated with MCAS differed significantly across the groups, with higher rates in the hEDS and HSD/hypermobility groups than in patients who screened negative for hypermobility.

Overall, “hypermobile features are common among patients presenting for genito-pelvic pain,” the investigators wrote. Further studies assessing the mechanisms underlying these associations “will help guide the development of effective therapeutic interventions among patients with hEDS/HSD,” they concluded.