Pregnancy and Ehlers Danlos Type 3

Hi all,

I was diagnosed with Ehlers Danlos Type 3 Hyper-mobility around 3 years ago (at age 20) after numerous doctor and consultant visits, as many of you may relate. I score 9/9 on the Beighton scale and dislocate daily, but being so bendy means that 99% of the time my joints relocate on their own within seconds!

I have now been diagnosed with endometriosis, with a AMH of 7.7, only one ovary working and fibroids. I have decided to start to try to conceive as time is not on my side and I could be infertile in the near future.

However, I have tried to make an appointment with my EDS consultant to discuss this and any issues I may have, along with any precautions I need to take beforehand. Helpfully, my consultant has discharged me, as there is nothing more she can do and self help is they only option. As many of us know, re-referral will take quite a while and the chances of the same consultant are low.

Can any of you tell me any issues you had during pregnancy, any precautions you took before hand and things which helped? Also any stories are welcomed, relating to either condition and the roads you followed.

Thanks in advance!

10 Replies

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  • Hi, there are medical studies online relating to EDS and pregnancies which you may find helpful. In addition, it is worth considering that EDS is a dominant gene characteristic so there's a 50/50 chance your children will have the same condition and 100% that they will carry the gene and likely pass to their own offspring.

  • Hi,

    Thank you for your reply. I am fully aware that there is a 50/50 chance of passing this condition onto my offspring, it was the first thing I asked when diagnosed at 20. However, with me scoring 9/9 on the Beighton Scale, my mother having the condition also and with both of us living happy lives without many restrictions, I feel it isn't something that holds me back with this decision. Its more self help tips I am looking for with the pregnancy and any issues people have had during labour and after.

  • Apologies if I sounded judgemental or anything it wasn't intended. I did suggest the medical studies online because they give a wide range of medically-observed problems observed in other EDS mothers and would be a great resource. Myself and my sister have EDS which was not known until our teens. I have it very mild whereas my sister lives in constant pain and unable to work. My mother said had she known she wouldn't have had us, which must've been hard and brave to feel. Of course you'll know the severity is not indicated by the presentation in other family members so that's a bit unknown. I only raised the issue as although it's tough to talk about and everyone takes a different view on it (albeit a personal view for themselves not a view on other people's decisions) it is very much the centre of the decision to have children we all share.

  • No, because it is dominant, either your child will have it and their children will have a 50% chance of having it too, or your child will not have it and will not pass the condition on. The tricky bit is that some people are only mildly affected, but their children still have a 50% chance of being affected and can be more severely affected than their parent. My older daughter is only mildly affected and probably would not be diagnosed with it without the supporting family history, but it looks like her daughter (my granddaughter) probably has it and is more severely affected than her mother.

  • Hi, First of all, my sympathies. You are having to deal with two painful conditions, both of which are not very visible.

    I had a good pregnancy. Bear in mind that you will become more flexible, and you would need some sort of support band for the later stages. I actually felt really good.

    Birth - entirely different matter. Muscles simply gave up on labour and it did not proceed. There were other complications. So then I had an emergency caesarean. The epidural did not work - those of us with anaesthetic resistance have problems with this, so all in all it was a very painful and shocking experience. Then, due to a mix of delayed birth and hospital incompetence, my boy nearly died and had to be resusitated and taken to special care baby unit. 5 weeks later, when I should have been looking after my body and baby, we moved house, and I spent about a year with a form of PTSD - I lost the ability to make rational decisions.

    If you give birth naturally, your chances of a prolapse will greatly increase.

    It could have gone a lot better with more knowledge and support, and I am aware of women with hEDS on other sites who have had no more birth problems than average, and have had several children. I also know one woman with hEDS, about your age, who has been strongly advised not to have children.

    The Bear gives the odds; it is worth thinking about what you will do if you have a child with the same condition. Worst case: you won't be healthy, and you could be looking after a child who is in pain too. When I had my boy, I did not know that I had hEDS, and I have no idea what decision I would have made if I did - the urge to have children is strong.

    Genetic counselling is available on the NHS, and you could get a referral to one first.

    Happy Ever After: the boy doesn't have hEDS, he eventually recovered from the birth trauma which left him with developmental delay for a few years. He is currently at college doing an advanced BTEC, and the only consequential damage is a lingering tiny speech defect. I made sure I had no more children.

  • Hi Jay,

    Thank you for your reply and telling me about your experience. As a fellow sufferer, I'm sure you agree sometimes that this condition being almost invisible can sometimes be frustrating! Even visiting doctors to do with my newly diagnosed endometriosis seem to look as if it can't be true that I have EDS as I sit there with a full face of makeup and look generally 'well'!

    I have read a few stories of the muscles giving up during labour, and think a c-section would be a safer option for me (with my fingers crossed that I make it to that stage). As I have found out, when having local anaesthetic my body seems to have a tolerance to it, which means I need double, sometimes triple the amount, but I guess that would be something I could talk through with the hospital. It helps that some doctors are becoming more aware of the condition and I hope this will continue, it certainly makes our lives easier.

    The 50/50 chance is not something that's currently holding me back, my consultant seems to think there is no reasons why I cannot have children, and seeing as myself and my mother are living a very happy life with minimal restrictions, I feel my children can do the same. If that is sadly not the outcome, I'm sure we will battle through the same as we have.

    I am so pleased to hear your child has recovered from the birth trauma and I thank you so much for your honest post.

  • I didn't know I had EDS when I got pregnant so I wasn't worried about anything and didn't look out for anything. I think psychologically that is a really good place to be in. I already had a lot of hand and wrist issues which got worse, and it was just brushed away as tunnel carpel, and they gave me splints. And towards the end my SI joints were moving and painful, and I had trouble sleeping.

    The birth itself was fine. It was really quick, except for the fact that the second stage went on a bit as my son had the cord wrapped around his neck. Luckily it was a cottage hospital midwife lead unit, with my own GP there too. So they managed to grab the cord and snip it then he just slid out.

    It seems that due to laxity the brith process even for a first one can be quick. In fact the midwives said I had to book for a home birth if I had a second because they didn't think I would make it to hospital.

    After I had lots of aches and pains, but all women do for about a year until the joints tighten up again. My son breastfed lots, and it was great as I got a lot of sleep. We co-slept and he got the hang of feeding without waking me.

    I tried many different positions for breastfeeding for when the joint pain was getting to me, so things like the football hold with the baby resting on the dog that was on the sofa beside me. If you want a good relaxed position to breastfeed in that is good for baby and mother, try Biological nurturing website. biologicalnurturing.com

    The position means that all your body is supported which is good for joints, and much better than the old sitting straight upright that they used to teach.

    As for passing it on, yes, my son has EDS, and worse than me, but I don't regret having him.

  • Cyberbarn,

    Thank you for your reply, the info is so helpful! The breastfeeding website looks like it will definitely help when I get to that stage (fingers crossed). I have heard that the aches and pains do worsen during and after pregnancy, and that its a good idea to get your body in the fittest state possible before you get pregnant (easier said than done with a full time job, hospital appointments and EDS as you probably agree!) but its something I will try my best on.

    My mother said the same, she had no idea she had EDS during pregnancy but thinks now it would have been better as I could have started on supplements like vitamin D, get corrective innersoles for my shoes and avoid surgery at a younger age, she didn't find out she had the condition until I did. She has it mildly, and I unluckily am more severe, but she would agree there is no regrets there.

  • I would agree about being as fit a possible when you are pregnant. I walked our dogs (big dogs that thought anything less than 10 miles wasn't worth getting out of bed for!) right up until the day I gave birth. In fact I walked them one last time while I was in labour! It was slow going and they only got a mile or so, but it helped a lot to keep fit.

    And yes, I didn't know about insoles back then and I wish I had, I am sure it would have helped my hips.Have you got a podiatrist locally you can see? Some areas you can self refer others you need a GP to refer.

    There are other things too like pregnancy belts, and if you go to antenatal classes you should be able to get referred to or find out about a Obstetric physio. We had one attached to our maternity unit that we could talk to if we had problems and she gave everyone exercises to do. I am sure most women don't bother, and I know some men pamper their wives and tell them not to do any housework and the like, but that doesn't help, keeping active does.

    Interestingly, when I was a breastfeeding counsellor, we had a workshop once on aches and pains during breastfeeding, and it seemed that many women had joint pain for at least a year. I don't think all these women had EDS, so it is worth remembering that not all your aches and pains will be because of EDS, some will just be what women go through. And don't let anyone blame breastfeeding for it, even women who don't take a year for all their joints to return to 'normal'. Or should I say the new normal!

    It sounds like you have the right attitude. It will get you a long way!

  • I have two daughters, and both pregnancies ended with premature rupture of membranes (i.e. my waters broke early) so my daughters were both premature, though thankfully only slightly so.

    During my first pregnancy my sacroiliac ligaments complained then gave up entirely when we were on our way to an antenatal appointment, about a block from the clinic - my husband had to go borrow a wheelchair to get me there and they said "you will be spending the night with us". Turned out to be 3 nights, till they were certain that it was just my sacroiliac joints that were affected and not the rest of my spine. Flat on my back in hospital - boring! I struggled to walk for the rest of that pregnancy, which lasted about 7 weeks longer, I think.

    Throughout both pregnancies my hips were slipping out of joint on a pretty much daily basis, but slipped back in without medical help. (My work colleagues got used to me lying down and saying "could you please pull on my ankle till my hip slips back into place"!) It took several months after each birth till my hips finally pretty much got back to normal, which for me still does include occasional subluxations.

    My first daughter was in an awkward presentation when my waters went, and after I had been in transition for 2 hours they insisted on giving me an epidural. This did help with the pain, but not enough that I would have been happy to have an emergency caesarean without further anaesthetic help, and it had pretty much worn off by the time they were stitching up my episiotomy 5 hours later, though according to them it should still have been providing sufficient pain relief - ouch! That was the most painful part of the whole business!

    I did develop a rectocele after my first daughter's birth, which I have lived with ever since. She is 34 now. It has been a fairly minor nuisance throughout most of this time, rather than a major problem.

    My second pregnancy went more smoothly, at least in part because I knew to be careful with walking and standing from mid-pregnancy on. I got myself a walking stick that could be turned into a proper seat, so that I could sit down when I felt the need, wherever I was. This helped tremendously and I credit it for allowing me to complete the pregnancy without the sacroiliac insufficiency I suffered during my first pregnancy. Having a walking stick also improves the likelihood that someone will give up their seat for you on public transport, which is a big plus!

    My second delivery was quick and uneventful. I did have quite a lot of stress incontinence afterwards, but lots of Kegel exercises soon put paid to this.

    My older daughter probably does have EDS, but is only very mildly affected. My younger daughter definitely has it, and is probably more severely affected than I am. I wouldn't be without either of them.

    Best wishes for the future!

    Barbara

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