Hormonally Yours...

HEDS Up! edition 1

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#HormonallyYours 

Loads of women with Ehlers-Danlos and Hypermobility Disorders (EDS/HSD) say their symptoms worsen at points in their monthly cycle. But not everyone knows it's officially recognised that hormones can impact on a Bendy body.

Hormones are chemical messengers in our blood stream secreted from various glands around the body. There are a variety of hormonal changes that can influence EDS and, unsurprisingly, this is an issue associated primarily with women. 

 There is an expected overall increase in joint laxity

during pregnancy.

The changes usually disappear after childbirth, although breastfeeding may

increase their longevity. 

The main impact hormones have is the exacerbation of hypermobility and joint pain. In 2008, it was believed that two groups of hormones affect EDS – metabolic steroids and secreted adrenals. 


Obviously, biological males and females have different hormones. The male sex hormones, Androgens, are said to have little effect on collagen. 


In fact, male hormones may actually help by increasing muscle bulk around joints – aiding stabilisation and protection. Female hormones are Oestrogens (Estrogens) and Progestogens. Levels of both fluctuate constantly throughout the female monthly cycle. 


Many women with EDS notice a worsening of their symptoms during the run-up to their period (increased pain, subluxations, dislocations, clumsiness, etc.). 


This is when Progesterone is at high levels. It's believed that Progestogens 'loosen' collagens, whereas Oestrogens stabilise them. If a woman’s periods become irregular, it’s possible that the Progestogens are more pronounced in her body, and longer lasting. 


The effects of these hormones have possible implications for women who want to use hormone-based contraception. 

Pros and Cons
A variety of contraceptive pills and implants are available. Many combine Oestrogens and Progesterone and some use only Progesterone. 

As we just said above,  higher Progesterone levels (and contraceptives) can increase hypermobility. That’s not to say, though that every women with EDS will experience changes because of hormonal changes.

 Levels of Relaxin in women 
with EDS, flat feet and/or a
curvature of the spine
are significantly higher - when they are NOT pregnant.

It’s probably no surprise to find that most medics aren’t usually aware of the implications Progesterone has on female EDS, and they may prescribe contraception using this chemical for a very valid reason (e.g. to avoid Oestrogen if there is a familial history of certain Cancers or thrombosis).


As always, with EDS there are plates to spin and balances to weigh up when it comes to making  medical decisions. 

We try to appear like ducks - calm on the surface...But what part of the project ca\use a Behind-The-Screen Autonomic Sh*tstorm?

Pregnancy
During pregnancy, Oestrogen and Progesterone levels climb, along with the production of other important hormones. Relaxin relaxes ligaments for childbirth (original name, huh?) and Prolactin controls milk production – but is also slackens things, so there is an expected overall increase in joint laxity during pregnancy. The changes usually disappear after childbirth, although breastfeeding may increase their longevity. 

Professor Mike Pope’s research into HT-EDS/HSD suggests that after the first pregnancy, women's joints are looser, then they become looser again after the second, but following the third, there is no further decline.

It’s worth noting that although Pubis Symphasis Dysfunction is common in pregnancy and women without EDS/HSD have it, the chances of it happening in Bendy Bodies is higher.  

Some of the Stripey Sisterhood can expect pelvic problems from four months in to their pregnancy, so be sure to make our medical team aware of this if a baby is in your future - and get crutches and/or a wheelchair in advance of when you actually need it, as it takes time to arrange these things and for them to arrive. 

In 2015, Em, Okatayoglu, et al wrote a study called Serum Relaxin levels In Benign Hypermobility Syndrome (BJHS/JHS) looking at the levels of Serum Relaxin in 88 women – 48 with BJHS and 40 without. What they concluded contradicts the idea that problems caused by Relaxin begin and end with pregnancy. 

They found that the level of Relaxin in women with BJHS/EDS/HSD* who had flat feet (pes planus) and/or a forward curvature of the spine (think ‘hunchback’, hyperkyphosis) has significantly higher levels of this hormone in their system – when they are not pregnant. 

While they also say this doesn’t mean it causes the Syndrome, it certainly highlights the role hormones have to play in our bodies. 

What this means for the future of female EDS/HSD patients, we don’t know, 
but any increase in information can only be helpful in the long run.  

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