If you have Hypermobile Ehlers Danlos Syndrome, how is/was pregnancy for you

[Spatzenmesse]

I am 32 and thinking about having our first child. I was diagnosed with hEDS a few years ago. I don't have it incredibly badly, but I am still in some kind of pain most days, fatigue quite easily and have a (benign) heart arrythmia along with circulation problems (my hands and feet are usually blue). I also have slipped discs in my spine, possibly due to the hEDS. I work full time but this means spending most of the weekend resting.

I have heard that pregnancy makes symptoms worse, because everything is even looser than normal. But I've also heard people say that their symptoms actually got better during pregnancy.

So if you have hEDS how was pregnancy for you? Also did you have a natural birth or a c-section? I can't decide what would be best...

I have a diagnosis of HMS but suspected EDS type 3, and on a day to day basis I'm on the milder side of things.

First pregnancy I got mild SPD about 12 weeks and kept it manageable throughout with regular chiropractor treatments (not joint manipulation, working on my muscles), Epsom salt baths and a support belt. I was only fatigued in the first trimester and towards the very end. Other than my back, hips and knees, I was in less pain overall throughout the pregnancy and my fibro symptoms cleared right up. Before that pregnancy I was very fit and healthy, with very strong muscle tone which helped keep my joints stable. I had an uncomplicated water birth.

This pregnancy the SPD started about the same time again, but I am really struggling this time around. The thought of trying to get up or down the stairs makes me want to cry. If I sit too long I'm in agony, if I stand too long I'm in agony, if I lie down even slightly wrong I'm in agony. A sneeze or a cough sends ripping pains across my pelvis and into my groin. Again other than my knees, hips and backs overall I'm not in as much pain and no sign of any fibro symptoms. But I do cry most days because of the pain waist down. I was nowhere near as fit and muscular this time around though which is I why I think everything feels more unstable. The fatigue this time round has been debilitating as well. I will be hoping for a water birth again this time around

Every pregnancy is different and you may be lucky with your symptoms. Just remember there are pain killers that you can take in pregnancy

Thanks Bambamber. Can I ask, what exercise did you do before baby 1 to get so fit and strong? I find it very hard to gain muscle and if I do I lose it straight away...

I used to do aerial hoop and aerial silks, I started with 1 lesson a week and built up to doing 3 classes a week. Before that I had to do hydrotherapy and physiotherapy to slowly build up my strength, and I also went to a pain clinic who helped me to manage my pain and helped me stand without hyperextending my knees (I had to practice in front of a mirror). As I started getting stronger I took the plunge and started the aerial gymnastics and made the teachers well aware of the condition and they helped to keep me safe. It was still difficult not to hyperextend though as a lot is based on flexibility.

Aerial silks - cool! I’m starting some intensive Pilates which will hopefully help me get stronger.

Bump for any other experiences..?

I don’t have EDS myself but my DH does. I gave birth 2 weeks ago to our DD and there’s a 50:50 chance she’ll have it. On the birth front I was advised against forceps or vontouse delivery due to possible complications, so I had a lower threshold for going for c section. Luckily all was fine and had a natural delivery but it’s worth being aware. My DS was a forceps delivery 4 years ago before my DH was being seen by a consultant, which makes me anxious when I think of what could’ve gone wrong x x

I had SPD starting in the first trimester each time. It usually gets worse each pregnancy but for me it stayed the same because I did a lot of physio and pilates between each pregnancy. I would definitely recommend it! My physio said that in theory if your muscles are strong enough and being used correctly they can compensate for ligament laxity - but it practice that's pretty hard to do.

I had low blood pressure and fatigue before getting pregnant, and it became worse in the first pregnancy. Those problems completely went away after pregnancy (better than before) and I had normal blood pressure in the second (and high in the third, for unrelated reasons).

I had terrible heartburn with each, but who knows if that was EDS related.

Typical of EDS I found the second stage of labour fairly easy. My first I pushed for 20 minutes and my third was just 2 pushes (Sadly, the middle was a late miscarriage)

My oldest child is hypermobile, but my youngest appears not to be.

It sounds like a natural delivery should be fine then. Some of the official advice is just a bit scary! All that stuff about premature rupture of membranes etc. I am also worried about passing it on to the baby, but there’s not much I can do about that.

Hi Spatzenmesse,

I have EDS and I'm 24 weeks pregnant with my first child. I haven't found many difficulties during pregnancy, maybe a little more pain in my hips than usual. Although I am worrying my midwife and consultant becuase they've never heard of EDS before and everyone keeps panicking what it will do!