This blog post is sort of the reason I started this project in the first place. I was approached by a few EDSers who are thinking of starting a family or expanding their brood. They asked me to share my experience with them. There is some research out there about EDS and pregnancy but not a whole pile.

Firstly, before you begin trying to conceive, talk to your doctor.

Contrary to what many people believe, EDSers suffering from the hypermobility can experience very normal pregnancies. There are cases of course where labour may spontaneously start before the estimated birth date. It is the vascular type of EDS that causes the real concern amongst doctors. In my case, I developed symphysis pubis dysfunction (spd) very early on in my pregnancy which up until 12 weeks ago, put me in a wheelchair and caused me to use my smart crutches. SPD is fairly common in pregnancies in the general population but because of laxity in the joints already, EDS may produce a severe case.

Anyway, my pregnancy was quite difficult purely because of the pain. The baby and myself were generally in good health up until the day I was induced, but I’ll explain that another time.

So here are the main things that got me through my pregnancy and what I would also suggest to anyone planning on starting a family

1.Get as fit and healthy as possible

We had been trying to conceive for about 6 months when I fell pregnant. During that time I was actively loosing weight. I had put on lots of weight in the previous 8 years, and to take some pressure off my joints, I decided enough was enough. I lost almost 2 stone and I really think that made a huge difference to my fertility. I had also been getting more active, making the effort not to throw myself into bed at the first sign of pain and fatigue. Research also shows that the fitter you are in pregnancy, the easier your labour will be, should you have a straightforward vaginal birth.

2.Support, support and support.

The first and last trimester is tough for a lot of women, never mind anyone with additional issues such as gastroparesis or dysautonomia. It is vital you have a good support system in place, especially if this is a subsequent pregnancy and you have other children to care for. Luckily, my husband is at home full time so I could rest when I needed to. I know not everyone can afford a situation like ours.
If you have family or friends who are willing to help out by cooking, cleaning or looking after other children, take their help. Grab any offers with both hands and don’t be afraid to ask for help!

Make sure you have support from your health care professionals too. Both your GP and obstetrician should be made aware of your conditions and any meds you might be on. You should also talk to your GP about Physiotherapy and Occupational Therapy to help you cope during pregnancy if you don’t already have therapists in place.

It’s funny, some women with EDS greatly improve during pregnancy while others’ symptoms get worse. Pregnancy can increase laxity and therefore the incidence of injury may increase. Investing in some supports or mobility aids can make day to day life a little easier. It can often mean the difference between getting out of the house or looking at the same four walls for days on end. My smart crutches and wheelchair were a Godsend. I also had a belt to support my pelvis, it made the area feel more stable.

3. Relaxation and rest

Pregnancy is hard on the body, fatigue has been one of the biggest complaints I’ve heard from other women with EDS. The tiniest chore may mean spending the rest of the day in bed. While it is important to stay active as much as possible, it is also important, particularly for EDSers to get plenty of rest. Listen to your body! Cleaning the kitchen cupboards might sound like a great idea to a nesting mom but will it be worth spending the next few days in bed? Save your spoons for your doctors appointment or lunch with your friends.

Your friends might want to throw you a baby shower but if you’re having a particularly bad episode of fatigue or a pain flare up, being the centre of attention may not be your thing. Suggest a chill out girly day at home, binging on Netflix and sweets or a spa day. My Dad’s girlfriend took me to a spa during my pregnancy. It was my first time having a massage (I’m 28) so you can imagine how much I looked forward to it. Although it was very relaxing, it did require spoons. I slept a lot the next day.

4. Creature comforts

Pyjamas, Netflix subscription, a good book. There will be bed days, it’s inevitable, so be prepared. I have the Netflix app on my tablet and my phone so entertainment was always at hand. Of course no bed day is complete without a pair of super comfy pyjamas. I don’t know if it is an EDS thing, but all my clothes, including my PJs always feel tight come the end of the day. No-I have not put on 3 lbs during the day, it just happens. So when I was pregnant I always bought jammies a size too big – for maximum comfort. Don’t buy anything fleecy! If your in bed all day, you’ll just end up feeling hot and bothered – and not in the good way!

5.Have faith

As I write this piece I am nursing my little girl. Every time I look at her, I think how she was worth every second of pain, every hip pop, every day stuck in bed, the scary situation were in just before and after birth was worth having her in my life. During the pregnancy, there were days I panicked and thought, this is a mistake, why did I do this? But having Ollie pop here with us has made life so much better! I feel better too, I’m out and about so much more now. I’ve kicked my physio up a notch – her birth gave me an extra push to work hard to make myself as well as possible.

I wish you health and happiness.

Z.M