Lessons Learned during Pregnancy and Dealing with Ehlers-Danlos Syndrome

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If you have been told you have EDS than you may have heard this a million times “that’s just not safe” or “you’re just not built to do that.”

Understandably, I have had to adjust my lifestyle. I have to be careful with simple daily tasks like opening a jar or lifting something heavy, high impact sports are out of the question, and I have had to learn how to do things safely to not sublux or dislocate something.
But I wasn’t going to let fear or this “alternate ability” of my body going to intimidate or scare me out of the excitement of being pregnant.

I am a woman and I was made to give birth, I am all powerful, ROAR! 😉

 

But in all seriousness, the way we already treat pregnancy as a disease-state in this country is not going to excite anyone. And already having a “condition” that can affect my body and how it handles this new growth and development can bring up some anxiety.

But with EDS I did have some obstacles to overcome and I did learn a few things on the way of my pregnancy journey

1)Focus on yourself and your baby

I am a big believer in being as healthy as you can be before you conceive. So really this focus on yourself and your future baby should start before you get pregnant.

Right off the bat in pregnancy I suffered from body-numbing fatigue. Sure, it got slightly better for a couple weeks in the second trimester, but I never felt great and I never felt like I had the energy to do much. Pair that up with 24/7 “morning sickness” the first trimester and just a general lack of motivation I was not getting a lot done around me. 

But this was not necessarily the time to be extra productive. 

Having EDS (Ehlers-Danlos Syndrome) I have already learned that I must stay in a balance of activity and to rest to be healthy and happy. This condition can naturally cause chronic pain and is linked to fatigue issues. I think of myself a little more on the “delicate” side of the spectrum and know that I have a max activity limit lower than many other people.  Being pregnant was a time for me to focus on living healthfully, getting the *right amount of exercise, and most of all creating a stress-free environment around me. This meant I took more time away from work, I said no to more social and business engagements, and I slept and rested A LOT.

 

 

2) Stay positive, don’t let fear overpower you

Getting pregnant can be scary, especially if you have struggled to get there. You have probably read the miscarriage statistics a million times, thinking that somehow knowing them will make a difference or, even crazier, make you feel better. It doesn’t. 

Having a miscarriage is most likely not your fault at all, and was an issue with the DNA in the embryo. It is not always unavoidable. 

But having EDS can slightly raise your chances for a second trimester miscarriage due to something called Cervical length shortening. This is because with EDS your connective tissue may not be strong enough to keep your cervix up high and closed bearing the weight of a growing baby.

This sounds terrifying, but with proper screening you can prevent problems from this issue.

I started out my pregnancy with the attitude of “as few ultrasounds as possible,” to having to have one every two weeks until I was 24 weeks pregnant. I luckily never had any issues with cervical shortening, but being proactive with my screenings also kept any fear at bay. 

With EDS, Another screening that was recommended was an ECHO of my heart and arteries during my pregnancy.  I am at a higher risk of having an aneurysm (oh fun!) This was going to cost a very, very large sum of money. I spoke with different doctors, my midwife, my family and trusted in what I already knew about my body. Being fit and previously screened I decided to pass on this test (this is a very personal choice and I would never recommend someone else to not to do it )

With a “condition” coming into pregnancy a lot of scary stuff can come up. Stay positive, remember that being pregnant is NOT being diseased, it is not a sickness, trust in the power and ability of your body and find a health team that can support you on your decisions and educate you through this journey.

 

 

3) Adjust and just do what you can

In my 21st week of pregnancy I started to feel intense pain in my pelvic and hip region. I was in so much pain walking was hardly possible and I was starting to feel trapped on the couch. 

I learned about Pubic Symphosis Dysfunction and discovered that is what I was suffering from. Your pubic bone connects your hips with a band of connective tissue. That connective tissue can separate and pull apart too much, causing pain and misalignment through your hips and legs. 

Welp, having EDS means my connective tissue already stretches too much. Being diagnosed with PSD was not a shock. You can hear horrible stories about ending up wheelchair bound by your third trimester from the pain. I was determined to be as pro-active with preventing further separation as possible, and immediately started seeing my physical therapist. We worked together through the remainder of the pregnancy and although I was hardly able to walk comfortably the last 6 weeks or so of my pregnancy I was still able to do light swimming and workouts. 

I had to adjust from my days of heavy weight lifting and working out to trying new things like getting in the pool more and just realizing that this was not the time to put extra stress on my body. I had to just try my best to stay as fit as possible. I’ve lost a lot of muscle, but hey, that’s what muscle memory is for and it is already coming back 😉 

 

4) Don’t forget about the basics

Having EDS just means you need to take extra care of the foundational pieces of your health.

Take care of your diet, eat well, eat foods that are anti-inflammatory to help with the stress in your body, and try to keep your gut and digestive system running smoothly.

Sleep, rest, and nap when you can. With EDS find the right balance of activity for you and don’t compare yourself to others.

Talk with others if you need support, journal, go inward and mediate. I decided to practice self-hypnosis for my natural birth starting at week 26. It was a big commitment but it was a meditative practice that I used for at least an hour a day until labor. This was HUGE for me to remain calm and relaxed during pregnancy as well as achieve my natural birth. 

Take care of the basics of what your body needs to be healthy and you are already doing well for yourself and your baby.

 

5) Laugh at the unexpected 

When you are pregnant you release a hormone called Relaxin. This makes you extra flexible (not something someone with EDS hyper mobility needs) to open up your body to the expansion of childbirth. This can cause issues like the PSD I described above. 

Welp, I also learned it can cause your gums to loosen and your teeth to shift. That’s right, pregnancy can give you crooked teeth!!! 

Well to my horror ( I never had braces or have ever had to worry about my smile) my teeth shifted and I am left with slightly crooked front teeth. 

Could I get upset, yes, but instead I am just going to laugh at this absurdity, wear some Invisalign for a few months and try to prevent this from happening the next time I am pregnant. 

My main message to those women out there with Ehlers-Danlos that want to get pregnant or are currently pregnant is this… Love your body. Although you may face some difficulties, love on yourself by taking care of your health as best as possible. Prevent issues that you may face by having a support team around you, and try to be healthy before you get pregnant. 

Realize you CAN do things like finding the right diet and lifestyle changes to help with this condition. There is a large spectrum of severity for those with EDS but no matter what, there is always something you can do to help. 

Be proud and honored you are growing life, accept that many of these difficulties are temporary and realize that having EDS does not mean you are “broken” it just means you may have to do things a little differently 😉 

If you have questions about Ehlers-Danlos Syndrome or would like support before or during your pregnancy please Comment below or Contact Me