Applesea Therapies

Finding out you’re pregnant can be an exiting, terrifying whirlwind of a time for anyone – and when you have a long term chronic condition, it can bring up discomfort, worry and fear alongside all the positive emotions.

How will my body cope? What happens in birth? What if I have to have a c-section? How can I cope with extra tiredness? Will I be allowed to have a choice? What does “High Risk” mean in pregnancy?

These are some of the things that went through my mind the first time I found out I was pregnant, so I’m going to share some personal experiences and some research which I found helpful.

1) Tell your midwife, but be prepared for them to not understand or know about the condition.
In my first pregnancy I didn’t get classed as “high risk” until the final stages of pregnancy and that was for a (potentially) unrelated condition called Intraheptic Choliostasis of Pregnancy, or Obstetric Choliostasis. This was partially because I moved cities mid pregnancy and though I took pregnancy notes with me the original place I registered for birth didn’t have a specialist high risk team. My new midwife, who only met me at 30 weeks pregnant, wasn’t caught up on my history and when I said I had Ehlers-Danlos she didn’t know what it was . She asked if I self managed it (which I do) and took that to mean I didn’t need to be classed as high risk, unlike in pregnancy two where I registered with the hospital and was immediately called and brought in to high risk care.

High Risk care, if available, is important because it means more appointments and more touch points with your midwifery team. They get to know your body and your normal better and it’s easier to examine the small things that can be more challenging with hEDS pregnancies. So if you are hEDS and you can access this care, do advocate for it!

2) Read about the challenges, and be aware few to none may be part of your journey.

hEDS is a spectrum and it affects us all differently. Some of us have stretchy skin, some don’t. Some of us have multiple dislocations, some get sprains more often, some have a high level of pain, some suffer more with fatigue. We’re a wonderful rainbow of experiences and this is the same with pregnancy. It’s useful to read up on the possible challenges, and be aware that you may get an easy ride where things are beautiful!

Common hEDS experiences include rapid birth¹, thanks to our more lax ligaments once the expansion starts it can happen fast. I will just state this wasn’t the case for me, both mine were over 24 hrs in labour! As many of you know, the lax ligaments don’t mean lax muscles and sometimes we end up with hypertonic pelvic floors to counteract laxity in the hips and pelvis.

3) Relaxin can make already lax joints feel more unstablel.

I mean this is obvious right? Relaxin is a hormone which plays a vital role in helping the body to soften and remodel during pregnancy. It’s of the insulin² family of hormones and has a specific role to play in healing of tissue due to it’s collagen altering properties – and I’m sure all EDS people are now perking their ears up since Ehlers-Danlos is known to have genetic collagen receptor links in some of its forms.

This means that you need to be extra careful, right from the off, that you are not overextending any joints. If you do yoga, or exercise, during pregnancy don’t go to the end of your range – go to around 55% or 60% of your range and try and use gentle resisted exercises to build strength. Your range will increase with the relaxin and it’s important to make sure that you’re not unintentionally damaging your joints (and maybe not feeling that damage because things feel loose). It also means that you may, towards the end of your pregnancy as the amount of relaxin increases in preparation for birth, feel like a bag of bones all jumbled up with nothing sitting right. I felt this way and I promise you it does ease, but I get it if it feels uncomfortable!

Relaxin isn’t all bad though, it has anti-inflammatory properties (Deghan F, 2014) which can actually be beneficial, meaning that there’s a reduction in pain and related symptoms in the first and second trimesters (though I’m with you if you think the first trimester sickness and symptoms wipe out and relaxin benefit). This can mean that actually pregnancy is one of the few times you get to live a relatively pain free existence. YMMV – not all of us get to experience this, I didn’t so much with my first but with my second this kicked in and it was glorious.

With hypermobility and Relaxin, we need to be aware that things that are stable in the general population can move more in EDS/HSD people, and this often gets dismissed or missed because the immediate response is “but that’s not a joint that moves much”. You might experience this not just in pregnancy, but in life! And Relaxin has an effect on this which leads me to…

4) PGP and SIJ pain

Ehlers-Danlos and Hypermobility people have higher instances of Pelvic Girdle Pain (PGP) and Sacro-Iliac Joint (SIJ) Pain³ – for example 26% of HSD folx vs 7% in the control population in a study carried out in the Netherlands in 2002. PGP and SIJ Pain can cause symptoms like grinding or clicking in the pelvis, shooting pains in the pelvis and pain in the lower back, legs, pelvis and knees. You may also have trouble walking, especially on uneven surfaces, and climbing stairs. This pain could be caused by excessive movement in the joint.

In non-hypermobile Folx the SI Joint moves between 2-4 mm maximum, and is held by very rigid connective tissue. In the hypermobile population this joint can, as expected, have more movement, and potentially suffer from asymmetry of the pelvic ligaments, which can lead to pain in some instances.
The pubic symphysis, which in non-hypermobile people will move a maximum of 2mm and have 1 degree of rotation, has been shown under radiological studies to have up to 5mm movement in the hypermobile population.
So you can see how in pregnancy – with the relaxin hormone wafting around your body making those supposedly extremely rigid ligaments even less rigid, you’ll end up with more movement and sometimes even dislocation.

Though PGP and SIJ Pain can be more common in HSD folx, it doesn’t happen to us all and dislocations of these joints are rare. However if you do get lasting pain, an inability to walk or – well, you likely know the dislocation feeling! Especially post labour and birth, advocate to the midwife and the consultant, shout that you have EDS, bring copies of research articles along in your birth bag and get your birth partner to INSIST they check you over before sending you home.

5) Local Anaesthesia is temperamental

If you’ve had a minor procedure before you’ll likely know this (I remember being 16 having teeth pulled and wondering why people were fine with this pain, and only put two and two together after diagnosis 11 years later), so remind your caregivers and factor this in.

With both mine I had an epidural, on the first I had spinal fluid leakage (apparently a common thing for hEDS folx) but they re-sited and fixed that once the anaesthetist was told I had hEDS. However the pain relief only worked for one side and I thought I wasn’t supposed to feel at all so I kept pushing that button and ended up completely unable to move my legs or stand up on them for 5 hours post birth – be cautious, just dull the pain enough that you can rest and cope so you can still be aware of your limbs!
On my second it took 3 attempts to site the epidural – that is common for everyone! and I managed pain relief for both sides but it never completely dulled the pain as the midwife said that I shouldn’t use so much I couldn’t feel my legs (the issue the first time round). This meant I still had a relatively high level of labour pain BUT I did still get 45 mins sleep, so it was completely manageable pain. I stopped the anaesthetic around 20 mins before we were going into the pushing phase; the midwife had checked and could see the head in the birth canal (she was surprised – I’d mentioned feeling pressure) and so that was my cue to stop the pain relief so I could feel where and when to push. If you’re at a hospital birth this is a really useful thing to remember if you end up wanting an epidural.

There’s so much more to say, and if you ever want to talk about pregnancy, hEDS/HSD and what to expect just drop me a line. I’m always willing to chat, listen and hear your fears – I may be able to find research to help alleviate them!

1. https://www.britishjournalofmidwifery.com/content/clinical-practice/a-clinical-update-on-hypermobile-ehlers-danlos-syndrome-during-pregnancy-birth-and-beyond/#:~:text=Management%20of%20POTS%20during%20pregnancy,Pezaro%20et%20al%2C%202018). Intrapartum care considerations section ↩︎
2. Dehghan F, Haerian BS, Muniandy S, Yusof A, Dragoo JL, Salleh N. The effect of relaxin on the musculoskeletal system. Scand J Med Sci Sports. 2014 Aug;24(4):e220-9. doi: 10.1111/sms.12149. Epub 2013 Nov 28. PMID: 24283470; PMCID: PMC4282454. ↩︎
3. Ali A, Andrezejowski P, Kanakaris NK, Giannoudis PV. Pelvic Girdle Pain, Hypermobility Spectrum Disorder and Hypermobility-types Ehlers-Danlos Syndrome: A Narrative Literature Review. J Clin Med. 2020 Dec 9;9(12) : 3992. doi: 10.3390/jcm9123992. PMID:33317183 ; PMCID: PMC7764306. ↩︎