My Experience of Joint Hypermobility Spectrum Disorder and Pregnancy

I thought it might be useful to write a post about my experience of Hypermobility Spectrum Disorder (formerly known as Joint Hypermobility Syndrome, apparently rheumatologists like renaming stuff) during pregnancy, as I would have found it helpful to read something like this when I was pregnant!

What is hypermobility spectrum disorder?

Basically it’s an overarching term for a group of conditions relating to joint hypermobility – i.e. in simplest terms, your joints extend more than they’re supposed to. I was diagnosed with it when I was 17, although at that point they called it joint hypermobility syndrome.

I actually meet the diagnostic criteria for a condition called hypermobile Ehlers-Danlos Syndrome (hEDS) although I’ve never been formally diagnosed with it. I did once see a dermatologist about something totally unrelated, and as it turns out he specialised in the dermatology of hEDS and was very excited to run a bunch of tests on my skin.

Hypermobility Spectrum Disorder and Pregnancy

How can hypermobility affect pregnancy and birth?

I was referred to an obstetrician once I was pregnant, thanks to all my stupid medical conditions, and she discussed the key potential issues from my hypermobility spectrum disorder and pregnancy, which basically are:

• Risk of the birth progressing quite quickly once you reach 4cm dilated.
• Risk of poor or slow wound healing.
• Risk of resistance to local anaesthetic.
• Risk of waters breaking early.
• Risk of additional pain during pregnancy due to the extra weight and hormone changes placing stress on the joints.

So which of these issues did I actually encounter? I’ll go over them in order…

Increased joint pain during pregnancy

Oh boy did I get this one. It actually started very early too, around week 12 or 13 – well before any significant weight gain, so I assume the issue was caused by the hormone relaxin, which your body produces during pregnancy and causes joints to loosen. If you already have loose, hypermobile joints, that’s not great.

You’re recommended to sleep on your side during pregnancy, but I found that when I slept on one side, the hip on the bottom would gradually partially dislocate during the night and it would eventually wake me up with the pain. Then I’d swap sides, and it would repeat on the other side. By the end of the night I would only be getting maybe half an hour on each side before the pain woke me up, and my joints were so sore and stiff in the mornings. It was not fun, and it got worse as my baby bump got bigger.

I did, however, find that physiotherapy really helped. I saw a great NHS physio who have me exercises to strengthen the muscles around my hips and it made a massive difference to my pain levels, although it didn’t cure it completely.

I’m now four months out from the birth and I would say that although the sleeping pain resolved basically as soon as I have birth, I can feel that the pregnancy has had a lasting effect on my left hip joint, which feels noticeably less stable and more often painful than previously.

Premature rupture of membranes

My waters broke at 36 weeks and 5 days, which is technically premature, but only just (37 weeks is technically full term). Premature rupture of membranes (waters breaking early, if you’re not a doctor) is a risk of hypermobility, so it’s possible that it was related.

Hypermobility and rapid labour

I didn’t go into labor naturally but was induced due to my waters breaking. I was put on the syntocinon drip and told to expect to progress by dilating about half a centimetre per hour. The midwife said she would check on my dilation at about the four hour mark, and that she expected me to progress about half a centimetre dilation per hour.

Two hours later I was in massive amounts of pain, they weren’t letting me have gas and air (because they said you had to be 4cm dilated first) and I felt that I definitely couldn’t cope with another 12 hours or more of it, so I asked for an epidural. The midwife put in the request, but the anaesthetists were in theatre so it wasn’t going to happen any time soon. Shortly afterwards, I got the very distinct feeling that my body was starting to push. I told the midwife but she didn’t seem that bothered. Fortunately, my husband then insisted that she check how dilated I was. She had a look, realised I was fully dilated and that I was indeed pushing.

Then it was panic stations! The midwife apparently had to write loads of stuff on the computer at this point, and thus had to call in a second midwife to take over with me.

Although the dilation stage had happened really quickly, the pushing stage did not. Fortunately they did let me have gas and air at last, which helped a lot with the pain.

They wanted the baby out within two hours of starting pushing (not sure if this is standard or due to the fact my waters had broken a long time before and they were worried about infection). At some point, a doctor appeared and said that if I didn’t make good progress in the next two pushes, they were going to do an emergency caesarian. Seemingly I did make enough progress, because she went away again. Then, some time later, a couple of other doctors appeared and said I had two pushes before they would do a ventouse (suction cup) delivery.

Resistance to anaesthetic

In order to get the baby out, they had to do an episiotsomy, which then needed stitches. They gave me local anaesthetic before the stitches, but it really didn’t work, I kept telling the doctor doing the stitching that I could feel it. So I guess I did have the resistance to local anaesthetic issue.

They didn’t seem to be clued up on my hypermobility and the plan to manage it during the birth, because they also used the normal dissolvable thread for the stitches, instead of the silk sutures I was supposed to have, to assist in case of poor wound healing. The dissolvable stitches were okay for me in the end fortunately. One stitch broke, but that could have been because I did so much walking to and from the neonatal intensive care unit in the week after Little Man was born (he developed a very serious case of jaundice and had to go into NICU). I didn’t notice any issues with healing, thankfully.

To be fair, the mess up with the stitches and the insufficient local anaesthetic may have been due to the fact that after Little Man arrived, I had a big post-partum haemorrhage. The alarms went off and lots of doctors and nurses suddenly appeared in the room, luckily I didn’t need a blood transfusion but was put on a drip and super woozy. So it was all a bit crazy in the delivery room, and I can see how things were missed. But I did think it was disappointing that, despite having flagged a lot of these potential issues well before the birth, we were still left with them not being managed very well – especially the rapid labour. Looking back I am annoyed that I was in so much pain with no pain relief and they didn’t even think to check my dilation to see whether things had progressed further than they were expecting.

What advice do I have for other hypermobile mamas-to-be?

If you’re pregnant and have hypermobility or hEDS, I recommend flagging it early to the hospital, but being prepared to advocate for yourself in the delivery room. It’s hard to do when you’re actually in labour yourself, so make sure your birth partner knows about your hypermobility and how it can affect pregancy and birth, and that they’re confident to advocate for you. I dread to think how long I would have been pushing before they thought to check my dilation, if it hadn’t been for my husband advocating for me.

I also highly recommend physiotherapy, as early in the pregnancy as possible. A lot of hospitals have long waiting lists for physio, so try to get on the list as early as possible.

Are you a mum who’s hypermobile? Let me know about your experiences with pregnancy and birth in the comments!