I realise this post may not be relevant or interesting for those who don’t menstruate. But maybe they should read it anyway, seeing as they probably have a mother, sister, daughter or other female relative with EDS who has this issue. Menstrual pain, or dysmenorrhea, is very common in EDS. This study puts it at nearly 83%.
Dysmenorrhea in EDS can be extremely debilitating. Most women suffer cramping from period pain. This is normal. But the period pain associated with EDS is excruciating and very disabling. It’s common for us to vomit and become incontinent and pass out with the pain. In fact, the level of pain is so close to childbirth that I once described it as ‘imagine giving birth once a month, every month, from the age of twelve, but with no baby as a result.’ It can be very hard for people to imagine the level of pain involved, and so we get called liars and accused of faking.
What do we do to overcome this? From speaking to others, it seems we share some common experiences. Namely, most painkillers don’t work and we try in vain every month to find one that does. Eventually, we turn to hormones. Contraceptive hormones to be precise. As most of us are young teenagers when we get our periods, we often have a hard time convincing parents and doctors of the value of prescribing ‘The Pill.’ The fact that we are usually virgins at the time and intend to remain so for a longish time, but need this medication for pain relief, is usually not believed. I was lucky, my mother went to the GP with me and insisted on it. She had experienced the same pain herself and knew how serious it was.
I now use the Mirena IUD and apart from spot bleeding for the first few weeks, I haven’t had a period in seven years. It has been a lifesaver, as due to my executive functioning problems and bad memory, I would occasionally forget to take the pills. And suffered as a consequence. It has served me well, and I intend on using it until menopause, but all woman are different and it doesn’t suit everyone. Also, various hormones can actually make EDS worse in some people. So, it’s really worthwhile having a discussion with your doctor on whether it might be suitable for you.
Well, there you have it. Menstruation, and menstrual pain, is a subject not really covered enough, in my opinion. Hopefully this post will go a little way towards correcting that.
[image of a red background, with the words ‘M is for Menstrual Pain, in white’]