Log in
Ehlers-Danlos Support UK
2,063 members648 posts

Advice for a Hypermobility sufferer

Hi,

It’s my first ever post on here, and believe it or not my first ever post in a forum seeking advice.

I have had Hypermobility Syndrome my entire life. But was diagnosed only a few years ago. As I’m sure you’ve all experienced, I was mis-diagnosed repeatedly. You name it it had it! It was only after 2 years of consistent complaining that I finally got somewhere. Within minutes of seeing a specialist she knew exactly what was wrong. It’s a strange feeling. A mixture of emotions which range from relief that you have answers and disappointed because it’s something you can fix. I’m very fortunate that I have such a loving and supportive husband, amazing friends and a very considerate work team. But it’s so hard to explain what you’re going through. But that’s not what I’m here for. I don’t need to explain what the pain is like, or the emotional struggle, because we all experience it.

My husband and I want to start trying for a family. But I worry that the pregnancy may be a struggle (more than usual!) and that I may not even be able to look after our little baby post birth.

Has anyone been in a similar situation? Do you have any advice? Any tips? Or am I over-thinking?

Appreciation and thanks in advance

11 Replies
oldestnewest

Hi and welcome! Having a child is a very personal and unique experience - some women just love it and go on to have several more, regardless of any disabling condition they suffer. Other women realise it is not for them, and choose not to do it again, for all kinds of good reasons. It is hard to predict how it will go for you.

I did not know I had hEDS, and did not know how difficult it would be. If I'd known, I would still have gone ahead and had a baby, but my planning would have been very very different.

I assume that you are aware of the genetic implications - you can have genetic counselling on the NHS if you like.

There is a little bit of information about hEDS and pregnancy here: edhs.info/about5

I had no problems in pregnancy itself - your joints will be looser and you will need to be very careful. I used an SI belt to help hold my hips together. Sleep may become difficult, but you are going to need to get used to that anyway. Buy a full body pillow - they are so helpful.

My labour was a different matter. You need to make sure your entire medical team is aware of your condition - for example, an epidural may well not work if you are resistant to anaesthetics. You can discuss the details with your midwife.

Afterwards, you may be more fatigued than an averagely healthy new mum. I was - we chose this time to move house (tip: do NOT do this). I packed the house contents and unpacked it all myself. I had moved further away from my friends and family, and within weeks I couldn't even walk up the stairs and had to crawl (misdiagnosis - iron deficiency).

My advice would be to surround yourself with helpers and volunteers from your band of amazing friends, and don't be shy about asking for help in advance. Ask your mum to move in for a couple of weeks. Hire a cleaner. Definitely share the burden of care with your husband - yes - even after he's been at work all day (he has a bigger reserve of energy and recharges quicker).

Second, third and fourth time parenting gets easier and easier. One big reason for this is that mothers learn how to both relax and to organise important stuff and just forget everything else. That is even more important for us.

Finally, you may be very committed to breast feeding (I know the pressure brought to bear if you don't). Breast or formula - this actually falls into the not-important bracket. If breastfeeding on demand means that you are not getting enough sleep to recharge, just switch to formula because it is vital that you stay healthy.

I don't think you are over-thinking. I believe your pregnancy, birth and new motherhood will all be better if you do a lot of planning in advance.

2 likes
Reply

Thank you for such amazing advice. My husband and I really appreciate. It’s difficult to know who to turn to so thank you so so much.

1 like
Reply

One thing you will never go short of when it comes to planning pregnancy is advice! Lol. It sounds like you have lovely family and friends - I am sure that with a bit of planning you'll be just fine, and probably enjoy it.

3 likes
Reply

Hi HanSharland 😊🌸🌿🦋

Welcome to the forum.

🌿🌹🌿🌹🌿🌹🌿🌹🌿🌹

Sorry I can’t offer any advice even though I have EDS too I also am a DES daughter which left me infertile. I understand your concern...it is a very serious issue.

🦋💗🦋💗🦋💗🦋💗🦋

One thing to remember is that because everyone is affected differently to each condition. Seldom is it totally textbook.

What others experience may not be your experience just a baseline as how it may play out.

🌈💦🌈💦🌈💦🌈💦🌈💦

Whatever your decision may be I just prayed for you that it will be the correct one for your health situation. May you receive abundant blessings. Take care and best wishes for your future.

🌺🌺🌺🌸🌸🌸🌺🌺🌺

😊🌸🌿🌺🤗💗😘

3 likes
Reply

Thank you for replying! It’s definitely food for thought. Thank you for the well wishes xxx

Reply

You’re welcome sweetie.

🌿🌹 😊🌸🌿🦋

Reply

I didn't even know I had EDS when I got pregnant. I just thought all my joint pain was from injury, I had no idea about the skin involvement at that point.

I was very active and fit before getting pregnant which I think really helped. In fact I walked the dogs for an hour after the contractions started!

But I did have splints for both my hands, because 'all pregnant ladies get carpel tunnel'.

I sailed though the birth, which isn't uncommon with EDS. The joints in the pelvis have already let out, contractions were fast and the whole thing was over in less than a day. They said it was more like a second birth than a first birth.

I had a very small episiotomy and the stitches fell out in no time (that isn't good). If I knew then what I knew now I would have insisted on non-absorbable stitches.

Breastfeeding lead to aches and pains, so I propped myself up (the dogs were helpful in this way!) to make sure that my body was supported. I had been having pain on my left side and a friend of mine who was a physio watched an entire feed and noticed that I kept listing to the left, so we installed a dog on the left to prop me up.

The carpal tunnel didn't go away because of course that wasn't what it was. But an osteopath finally sorted that out (it was a problem in my neck) and I gave up on the physios at that point.

One thing that was very helpful though was the antenatal physio that our maternity unit had. I also had a consultation with her after the birth, and she gave good advice and exercises to use.

I was pregnant in a very hot summer and I remember not being able to walk very well, both SI joints in my pelvis were moving more than they should have, but I took it easy, enjoyed the pregnancy and was really glad I didn't know about the EDS. If I had I might not have had my son!

2 likes
Reply

Oh, just one more thing, I told my GP that I was worried I might be too tired to get up and feed the baby at night (I was a single parent). She looked at me incredulously and said, 'You co-sleep with the baby, you don't have to get up!'

And she was right. It didn't take very long to be able to sleep through the night with my son beside me, helping himself when ever he was hungry! I didn't even have to wake up to latch him on!

A breastfeeding position for the very early days that might help is biological nurturing. it hadn't been described until my son was about 5, and I wish I had known about it in the early days.

biologicalnurturing.com

1 like
Reply

This is so helpful! Things I hadn’t even considered! I too have a dog and I know she’ll be more than happy to help! Thank you so much x

Reply

I too didn’t know o had EDS when I was expecting—I had three children. All three are hypermobile to varying degrees. Carrying my babies was very hard on me. I ended up on bed rest with each one, earlier with each one too. My third was the last I could tolerate. Birthing was a breeze, too fast actually, but then, I’d been struggling g to keep them in a long while. As others, I had a lot of problems with my hips and sacrum. My hip dislocated during pregnancy, little did I know that’s what was happening at the time. So all that said, be well read as to some of the complications and be prepared. A solid support team and a full understanding of what you and your spouse may experience will be of tremendous help. I wish I’d known then what I know now! Lol. But Knowing my diagnosis then likely wouldn’t have changed my decision to have children. How hard or easy it is on you may change whether you want to do it again,but that’s the case with all moms!

Best of luck no matter what you decide is right for you! ❤️

Reply

I think you perhaps are over thinking a little. Obviously it depends on the severity of your condition. I had my children in my twenties last one at 29 and at the time I had no idea I had hyper/ehlers. However having said that I did have two difficult pregnancies but that's not to say it was ehlers. I had my first by section and that was cos the cord was starting to go round his neck and I had blood pressure issues. Which I suppose is normal for most pregnancies my second I had a normal birth but had the baby been bigger I would have had a section as I discovered I had I low pelvis. So my advise is perhaps get checked over with view of carrying your baby and make sure that midwives know your condition and see if it's recommended for a section. But that will depend on your condition n how you are physically. So I managed it and didn't know I had ehlers but I obviously had it all my life. Good luck. Hope my rambling has helpt you in some way.

Reply

You may also like...