IMPORTANT NOTE - PLEASE READ:
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Gynaecological Aspects and EDS-H / JHS
Gynaecological aspects of JHS/EDS-H have been largely ignored in the past. However, it is now clear that women with JHS/EDS-H commonly suffer from the following:-
Dysmenorhea - (Painful menstrual cramps) Defective collagen can mean that the muscles in the
womb have to contract much harder during a woman's period in order to shed the unused lining.
Metrorrhagia - (Bleeding from the uterus between menstrual periods)
Menorrhagia - (Heavy periods that recur each month, with blood flow that interferes with your
quality of life)
When should I see my GP?
Talk to your GP if you have any of the following changes in your periods:
you have very heavy periods, where you need to change your tampon or pad every hour or two, or you have to wear both a pad and a tampon
your periods last longer than seven days
you are experiencing painful cramps which are not easily aleviated with normal painkillers
there are fewer than three weeks between the start of one period and the next
you have bleeding or spotting between periods
you are bleeding after sex
Fertility and Pregnancy
Fertility and pregnancy are usually unaffected by JHS/EDS-HT although more attention should be posed on obstetric and anaesthetic interventions' (Quote: Marco Castori 2012).
The additional risks which should be considered include:
'A higher risk of premature rupture of the membranes, precipitate (unusually rapid) delivery and bleeding. Further risks are perineal trauma and subsequent poor wound healing and of later complications such as urinary and faecal incontinence. Hypermobile women with unstable hip (pelvic), knee or spinal joints are vulnerable to injury if placed in inappropriate positions during labour or operative delivery, and the use of regional or general anaesthesia may increase this risk by eliminating pain when joints sublux or dislocate. Careful, collaborative antenatal planning and clear documentation of risks and care plans should be used to alert staff on duty when women present in labour and thus reduce the incidence of some of these complications.' (Quote: Malid Molloholli, Specialty Registrar in Obstetrics and Gynaecology,Horton General Hospital, Oxford Radcliffe Hospitals NHS Trust).
'Pelvic prolapse is the most debilitating gynecologic feature of JHS/EDS-HT, and, accordingly, it was comprised in the revised Brighton criteria. Clinical manifestations mainly include urinary stress incontinence, uterine prolapse, and faecal incontinence. Although prolapses may occur in the nullipara (women who have never been pregnant), they are most often facilitated by episiotomy and vaginal tears.' following childbirth. (Quote: Marco Castori, Medical Genetics Dept. of Molecular Medicine 2012)
The midwife you are allocated will go through your medical history at your first meeting. Make sure that you inform your midwife of your condition and any concerns you may have. Take some information on EDS-H / JHS along with you for reference, as midwives don't know every medical condition. If necessary you may be referred to an obstetrician who can asses the level of medicalised care you may need, and so that you can discuss any worries you may have about position, anaesthesia, natural delivery versus cesarean etc.
At the time of writing (2013) there are no formal obstetric management guidelines for patients with EDS-H / JHS, and this, in itself, shows the difficulties incurred when trying to producing a plan for a condition that can involve such a wide range of symptom severity (or lack of) between different patients. Instead, management plans should be made on a case-by-case basis, taking into account the diagnosis of type and severity of EDS, to optimise maternal and neonatal outcomes.
To read more about Pregnancy and other aspects of the management of hypermobility syndrome why not take a look at the article written by Dr Alan J Hakim MA FRCP, on the Hypermobility Syndromes Association's website:
References: For references and information sources used within this site, please see 'References' page, under 'Resources and Links' on the main menu.