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Urinary Incontinence and EDS-H / JHS

A study of Women with Marfan / Ehlers-Danlos syndrome by the Department of Obstetrics and Gynecology in Texas concluded that 'women with these conditions suffer high rates of urinary incontinence and pelvic organ prolapse. This finding supports the hypothesized etiologic role of connective tissue disorders as a factor in the pathogenesis of these conditions'.  (Quote: Carley ME, Schaffer J.Am J Obstet Gynecol, Department of Obstetrics and Gynecology, University of Texas Southwestern Medical Center, USA.


In an article recently published by Doctor Alan Hakim MA FRCP for the Hypermobility Syndromes Association (, he is a little more cautious, writing that: 


'Bladder symptoms are often present in the hypermobility syndrome. (but) It is not clear whether these symptoms are more common in hypermobility than in the general population.  However, treatments, in particular surgery, and advice on fluid intake, may require modification to account for problems that tend to arise in the hypermobility syndromes.


He continues:  'Perhaps more important than risk (of urinary problems in EDS-H / JHS) is the mechanism by which these conditions arise and the treatments that can be offered.  The causes of urinary tract dysfunction in the hypermobility syndromes may be related to changes in the anatomy of the bladder and pelvis, or may be neurological and affecting the sympathetic nerve autonomic control of the bladder, psychogenic (influenced by things like anxiety and pain), or as a consequence of infection and inflammation of the urinary tract.  It is also important to consider the presence of bowel problems too in the hypermobility syndromes, as things like chronic constipation may affect bladder function.'


'Disorders of collagen can manifest in many ways, and suspicion of such a condition being responsible for symptoms in one area of the body should lead to an overall investigation of gross collagen function in other areas, such as in the musculoskeletal system. Particularly in cases of stress incontinence in a nulliparous woman (i.e. those yet to have children), practitioners may want to inquire about joint flexibility, as these easy to illicit signs may lead to expedited management for patients with unrecognized joint problems'.  (Institute of Neurology UCLH)


Loosely knit collagen fibres can mean that the pelvic floor is far less able to adequately support the internal organs and this lack of strength may play a role in incontinence.  Stretchy collagen in the bladder-wall can also allow the bladder to stretch far more than that of a non-hypermobile person, meaning a patient often ‘holds on’ far longer than they should before urinating, causing urination problems, infection, or leaking. One of the main causes of stress incontinence is urethral hypermobility.


'The ligaments in a woman’s genitourinary system, supporting the uterus can be stretchy and weak, leading to an increased risk of uterine prolapse, a condition where the uterus “slips” and presses on the bladder. Weakness and excessive stretchiness of other tissues in the pelvis increase the risk of cystocele and rectocele, conditions in which the bladder and rectum, respectively, push on the walls of the vagina.' (Dr. Alan Pocinki MD).


Below is an article summary, written to the to the medical community in 2013:


'Doctors rarely acknowledge the substantial impact incontinence has on the quality of life of women with benign joint hypermobility syndrome. The majority of time female patients spend is in specialised rheumatology/hypermobility clinics considering all other aspects of this condition.


Doctors spend an insignificant amount of time asking about gynaecological issues. Underdiagnosis of these issues may be in part due to patient underreporting of their symptoms to their physicians and in part to a failure by general practitioners and rheumatologists to routinely screen for these symptoms. It is important to identify women who are symptomatic.The addition of a systematic, active case-finding approach may be more effective in identifying these cases.


Such a high prevalence of incontinence may justify the need for an integrated continence pathway in the larger specialised hypermobility units in the country.'


Written by H. Mastoroudes, I. Giarenis, L. Cardozo, S. Srikrishna, M. Vella, D. Robinson, H. Kazkaz and R. Grahame, 



Careful attention should be paid to women with Joint Hypermobility Syndrome, Ehlers-Danlos Syndrome and Marfan’s Syndrome because of an association with many gynaecological complaints. Women with these syndromes should be questioned regarding incontinence, and other issues such as genital prolapse, endometriosis, and dyspareunia. 


The British Medical Journal states the following:


‘From our experience in uro-gynaecology, we have elicited another common clue that suggests joint hypermobility syndrome. This is the symptom of urinary stress incontinence in the nulliparous woman (i.e. those yet to have children). Urinary stress incontinence is invariably the consequence of pelvic floor trauma following childbirth. As such, it is exceedingly unusual in the woman who has not given birth.'


In recent years we have encountered several nulliparous women with urinary stress incontinence. They were referred for a geneticist's opinion, and all of these nulliparous women with urinary stress incontinence were found to have Joint Hypermobility Syndrome or Ehlers-Danlos syndrome.

These women were all young when they presented to the uro-gynaecology clinic. We hope that by early identification of their joint hypermobility syndrome, appropriate advice and physiotherapy may delay, or possibly prevent, the development of pain and disability that can develop in people with Joint Hypermobility Syndrome.’


(Malcolm John Dickson, Consultant Obstetrician & Gynaecologist

Mari Isdale, Sarah Davies Rochdale Infirmary).

Teaching women, and, as happens if France, school girls, the importance of carrying out pelvic floor exercises, is an important step in minimising the risk of problems occuring and helping to treat any that do.  This is particularly important if the female has identified as having the defective collagen structure found in those with EDS-H / JHS.


Pelvic floor exercises to treat stress incontinence:


It is important that you exercise the correct muscles. Your doctor may refer you to a continence advisor or physiotherapist for advice on the exercises. The sort of exercises are as follows:


Learning to exercise the right muscles:


  • Sit in a chair with your knees slightly apart. Imagine you are trying to stop wind escaping from your anus (back passage). You will have to squeeze the muscle just above the entrance to the anus. You should feel some movement in the muscle. Don't move your buttocks or legs.

  • Now imagine you are passing urine and are trying to stop the stream. You will find yourself using slightly different parts of the pelvic floor muscles to the first exercise (ones nearer the front). These are the ones to strengthen. If you are not sure that you are exercising the right muscles, put a couple of fingers into your vagina. You should feel a gentle squeeze when doing the exercise.

Doing the exercises:


  • You need to do the exercises every day.

  • Sit, stand or lie with your knees slightly apart. Slowly tighten your pelvic floor muscles under the bladder as hard as you can. Hold to the count of five, then relax. Repeat at least five times. These are called slow pull-ups.

  • Then do the same exercise quickly for a second or two. Repeat at least five times. These are called fast pull-ups.

  • Keep repeating the five slow pull-ups and the five fast pull-ups for five minutes.

  • Aim to do the above exercises for about five minutes at least three times a day, and preferably 6-10 times a day.

  • Ideally, do each five-minute bout of exercise in different positions. That is, sometimes when sitting, sometimes when standing, and sometimes when lying down.

  • As the muscles become stronger, increase the length of time you hold each slow pull-up. You are doing well if you can hold each slow pull-up for a count of 10 (about 10 seconds).

  • Do not squeeze other muscles at the same time as you squeeze your pelvic floor muscles. For example, do not use any muscles in your back, thighs, or buttocks.

  • In addition to the times you set aside to do the exercises, try to get into the habit of doing exercises whilst going about everyday life. For example, when answering the phone, when washing up, etc.

  • After several weeks the muscles will start to feel stronger. You may find you can squeeze the pelvic floor muscles for much longer without the muscles feeling tired.

It takes time, effort and practice to become good at these exercises. It is advised that you do these exercises for at least three months to start with. You should start to see benefits after a few weeks. However, it often takes 8-20 weeks for most improvement to occur. After this time you may be cured from stress incontinence. If you are not sure that you are doing the correct exercises, ask a doctor, physiotherapist or continence advisor for advice. If possible, continue exercising as a part of everyday life for the rest of your life to stop the problem recurring. Once incontinence has gone, you may only need to do 1-2 five-minute bouts of exercise each day to keep the pelvic floor muscles strong and toned up, and incontinence away.







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