EDS Impact on Gynaecological Health

Ehlers-Danlos syndromes (EDS) are a collection of inheritable connective tissue disorders characterised by joint hypermobility, skin stretchiness, and fragile tissue. EDS severity is on a spectrum, so each person may have a different set of symptoms.

Any of the 13 Ehlers-Danlos subtypes can result in prolapsed pelvic organs since the connective tissue that holds the abdominal organs in and up can be stretchy or loose. This stretch allows what should stay up to fall.

The most common type of EDS is hypermobile EDS (hEDS), but accurate numbers aren’t known, as EDS is frequently left undiagnosed or incorrectly diagnosed.

The 13 types of EDS

Arthrochalasia EDS (aEDS)
Brittle cornea syndrome (BCS)
Cardiac valvular EDS (cvEDS)
Classical EDS (cEDS)
Classical-like EDS (clEDS)
Dermatosparaxis (dEDS)
Hypermobile EDS (hEDS)
Kyphoscoliotic EDS (kEDS)
Musculocontractural EDS (mcEDS)
Myopathic EDS (mEDS)
Periodontal EDS (pEDS)
Spondylodysplastic EDS (spEDS)
Vascular EDS (vEDS)

Symptoms of EDS

There are many manifestations of Ehlers-Danlos syndromes, including mast cell activation syndrome (MCAS), histamine intolerance, interstitial cystitis (IC), allergic symptoms (eczema, rhinitis, hives), dysautonomia (and postural orthostatic tachycardia syndrome or POTS), chronic fatigue, digestive problems and irritable bowel symptoms, joint hypermobility, fibromyalgia, and many others.

Symptoms may appear anywhere on the body, including the vulva, vagina, and urinary tract, and EDS may affect hormones. There is a high number of gynaecological complaints amongst biological females with Ehlers-Danlos spectrum syndromes¹.

The most common gynaecological complaints in EDS include:

Heavy periods (menorrhagia)
Period pain (dysmenorrhoea)
Painful sex/penetration (dyspareunia)
Vulva and vaginal pain (vulvodynia)
High rates of miscarriage and recurrent miscarriages
Urinary tract issues such as incontinence
More severe symptoms may occur during puberty, premenstrually, postpartum, and while on the oral contraceptive pill
Endometriosis
Previous hysterectomy
Prolapse
Ovarian cysts, fibroids, or abdominal or pelvic scars
Vulval/vaginal cuts and tears

The role of connective tissue in the body

Connective tissue provides strength and elasticity, containing tough protein fibres (collagen) that have some stretch but also have important limits that help keep us safe. Once stretched, normal fibres then return to their usual position. This allows flexibility in our body for movement, and for keeping us from, say, falling over if we roll an ankle.

Using the rolled ankle as a good example: if you step off a curb the wrong way, and the tendons in the ankle don’t pull tight to help keep you upright, the ankle may just roll right over and under. The result could be a broken bone, instead of a sprained ankle.

Loose joints can be a big problem in EDS, so ensuring muscle strength, rather than flexibility (so focusing on weight training rather than yoga), can be important protection.

In Ehlers-Danlos syndromes, the connective tissue fibres are faulty, more stretchy and looser, potentially resulting in symptoms across the body, in tendons, blood vessels, organs, gums, ligaments, skin or even the eyes.

The connection of EDS with vulvodynia and vulval pain

People with EDS may have frequent pain throughout the body, with the vulva being no exception. Vulvodynia may be present as a symptom of EDS, with several mechanisms potentially at play.

The pelvic floor may be hypertonic as a reflex to ‘hold up’ the abdominal organs, causing pain; there may be a proliferation of sensitive nerve fibres in the vestibule or vulva, resulting in excessive pain signals; and inflammation due to mast cell activation.

Urinary tract and bladder problems in EDS

There is an increased risk of urinary tract and bladder disorders found in people with EDS. There may be anatomical differences in the pelvis and urinary tract, or dysfunction in the autonomic nervous system (dysautonomia) causing bladder control problems.

Inflammation may also play a role, alongside bowel issues that can affect urinary function. Interstitial cystitis is more common in those with EDS.

Pregnancy complications in EDS

Tissue can be very fragile in EDS across multiple organs, including the uterus and cervix. Pregnancy with EDS has risks for both mother and baby, with more frequent complications. These complications can come at a great emotional cost, particularly in undiagnosed EDS.

Vascular EDS (vEDS) has much more serious consequences, but hypermobile EDS (hEDS) still has several risks.

Pregnancy risks in EDS include:

Membranes may rupture prematurely, resulting in a premature birth and rapid labour and delivery (less than four hours)
Epidurals can result in worse outcomes for the mother
Breech position occurs more frequently if the baby is affected by EDS, resulting in dislocations of hips/shoulders in the baby at birth
Perineal tearing and episiotomy cuts can present healing and scarring problems and result later in easier prolapse of the uterus or bladder
Hemorrhage, uterine or artery rupture may occur more frequently due to blood vessel fragility
Joint pain and laxity may increase across a pregnancy due to increased production of relaxin (which is normal but may be more pronounced in EDS)
It is not known whether caesarean deliveries are safer than vaginal births, and the resultant tears
Genetic counselling should be obtained before conception if possible, particularly with vEDS

Treatment of EDS

Each person is treated based on the symptoms they are experiencing. Seeking the help of an EDS-knowledgable practitioner is important for correct diagnosis and appropriate treatment. EDS is not well understood, is often missed as a diagnosis, and may come with many significant quality-of-life issues. Having someone who understands your condition is imperative for the best treatments for symptoms.

References^2–6

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Chopra P, Tinkle B, Hamonet C, et al. Pain management in the Ehlers–Danlos syndromes. American J of Med Genetics Pt C. Published online February 10, 2017:212-219. doi:10.1002/ajmg.c.31554
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Glayzer JE, McFarlin BL, Castori M, et al. High rate of dyspareunia and probable vulvodynia in <scp>Ehlers–Danlos</scp> syndromes and hypermobility spectrum disorders: An online survey. American J of Med Genetics Pt C. Published online November 7, 2021:599-608. doi:10.1002/ajmg.c.31939
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Gilliam E, Hoffman JD, Yeh G. Urogenital and pelvic complications in the Ehlers‐Danlos syndromes and associated hypermobility spectrum disorders: A scoping review. Clinical Genetics. Published online September 2019:168-178. doi:10.1111/cge.13624
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Patel M, Khullar V. Urogynaecology and <scp>Ehlers–Danlos</scp> syndrome. American J of Med Genetics Pt C. Published online November 20, 2021:579-585. doi:10.1002/ajmg.c.31959