How Hormonal Changes Affect hEDS

When I gave birth to my son a little over 6 years ago is when my EDS became worse enough to start causing severe enough problems that eventually led to a diagnosis. One thing I started noticing after my diagnosis was that my joint issues flared around the time I got my period. I have seen mentions of this from many people who menstruate and have hEDS too. It’s a pretty common question in the EDS groups I’m in too! So what’s it all about?

(Please note that I am doing my best to use gender inclusive language in this post; please correct me if I can improve something)

The effects of hormonal changes will be more pronounced for people with uteruses because the monthly hormonal changes themselves are more pronounced. People with penises tend to have more stable hormones, and even if they were experiencing hormonal changes, men tend to have more muscle mass than women. This is assuming a person assigned male at birth; trans hormones are more complex than this and a trans man or trans woman will have different hormonal considerations. So those of us who menstruate will experience more hormonal changes and also deal with less muscle mass to protect those joints (depending on fitness level of course). If you are ovulating, then you will experience a slight hormonal change from then until you begin menstruating. At some point, the level of progesterone becomes higher than the level of estrogen. Estrogen is what would usually protect the connective tissues from the loosening effects of progesterone. If at this time you menstruate, eventually the progesterone level will go down, estrogen will become more dominant again, and the increased pain and laxity will go away. If you are pregnant, the progesterone level will stay elevated until the pregnancy is over.

Pregnancy considerations aside, what does this fluctuation mean for our poor connective tissues? It means that for 2-3 weeks out of the month, we will have normal levels of laxity. Then, in the several days leading up to menstruation we will have increased laxity, leading to increased pain and possibility of injury, until a few days into menstruation. For a more detailed medical explanation of all of this including birth control considerations, go here. (A note about birth control: the author recommends avoiding progestin only birth control. However if you, like me, have migraines with aura, this may be your only option for birth control. I have not found any issues from it but that’s a choice you have to make with your doctor about what’s best for you considering ALL of your medical conditions. I use the mini pill to control PMDD which is more important than possible increased joint laxity).

SO. What do we do? If you’re like me, you may have enough going on around the time of your menstruation that you become a tortured hermit. And that’s ok! It’s enough to just survive sometimes. Therefore, what becomes most important is what we do outside of this time period. Working on joint stabilization through resistance exercise is going to be really important. It may not lessen the pain much but it could be the key to avoiding dislocations during this time. I do have more subluxations during that week but I have managed to largely avoid full dislocation. You also want to make sure that your self-care is prepared in advance. Having any medications you need filled, basic life tasks done or easy to do, someone to help you out with chores, stuff for pain relief like bath supplies, heating pads, creams you like (love my icy hot roller when my spine is acting up!), and of course snacks and shows to watch. Think PMS prep but on steroids!

The most important thing in my opinion is noticing what’s coming and recognizing it and then giving yourself grace. You may not accomplish much during this time, especially if your joint issues get bad enough that you can’t move around much. Regardless if it’s from pain or fatigue, please be gentle with yourself. Your risk of injury is increased when you feel this way. If you push yourself too hard then you could end up with a serious injury and then you will be forced to rest even longer. You know your body best and so you may be able to do whatever you need to. But if you know you can’t, then don’t. And do not feel bad about that. Anyone who judges you because “It’s just a period” can actually be told to fuck right off!

I hope this is helpful. What I want you to take away from this is that you are not imagining things. There is a scientific explanation of what is happening during “that time of the month”. Some of you may be wondering, does this hormonal shit storm continue into our menopausal years? The answer is yes! Super awesome, eh?? Not really. I’ll be covering that at another point in the future. For now if you have any questions or comments, leave em here!


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