Table of Contents
The 9 Things Doctors Didn’t Tell Me About Peeclampsia
This month marks 22 months since I was diagnosed with preeclampsia. 22 months since I almost lost my life. 22 months when my life changed forever. I have spent the last 22 months researching, connecting with other survivors and health professionals trying to find answers. It wasn’t until I started this blog and connected with other advocates that I really learned valuable information about the long-term effects of preeclampsia, things I wish they would tell me about preeclampsia. All the things that doctors didn’t tell me about preeclampsia.
I had a great doctor and was at a great hospital, and I will never deny that. I had decent care afterward because my doctor met with me 1-2x a week until I was 8 weeks postpartum weaning me off of the blood pressure medication. My doctor arranged for genetic testing for autoimmune disorders, but my health insurance refused to cover it and that’s when my care stopped.
I thought the doctors would tell me about preeclampsia and if there was anything else I needed to worry about, but they didn’t. Yeah, I was suffering through the emotional and mental effects of a traumatic, near-death delivery along with my husband. But physically, I thought my body was healed with the effects of preeclampsia and I didn’t have to think about it anymore.
The only physical effects I still struggle with is my c-section scar is still really sensitive and my core is nonexistent due to, not only surgery but bedrest for a combination of nearly 3 months (pregnancy + healing from surgery postpartum). I also developed an insulin resistance that I am now on medication for and getting help with to reverse the effects.
It wasn’t until preeclampsia and HELLP survivors and advocates on Instagram would tell me about preeclampsia, and how there were more effects. They directed me to the Preeclampsia Foundation‘s website, specifically their page that teaches about the long-term impact of preeclampsia on survivors. Effects my doctors never spoke a word to me about. Effects I never knew existed.
What Doctors Didn’t Tell Me About Preeclampsia
3 Physical Effects:
- I have 3-4 times the risk of high blood pressure and 2 times the risk for heart disease and stroke (Preeclampsia Foundation).
- I have an increased risk of developing diabetes (Preeclampsia Foundation).
- Because I delivered preterm, had a low-birth-weight baby the risk of heart disease is even higher (Preeclampsia Foundation).
Tell Me About Preeclampsia 6 Mental/Emotional Effects:
- I am terrified to be pregnant again. What if the next time I don’t make it?
- I never, ever want to go through preeclampsia again, but I have a risk of it happening again. Is that risk worth it?
- I lost myself for 6 months. I was a ghost who could barely make it out of bed. After months of therapy and I was over a year postpartum was once I was no longer a ghost. The next time I will already have a toddler at home. What if the postpartum depression hits even harder? I would have 2 children to look after.
- My anxiety got worse. I have always been an anxious person, but after my traumatic experience, it was out of control. I would do things that, looking back seem wacko and over the top, but that was what I did to cope.
- How could I handle another NICU baby? Especially with a toddler at home?
- Would my husband be able to handle it emotionally if I got preeclampsia again?
Why didn’t my doctors tell me about preeclampsia in more depth?
I am really not sure. And that is a question that will probably never be answered. My opinion is doctors aren’t trained on this. Especially after talking with other survivors, doctors tend to be focused on the current problem and once that is solved (delivery, off BP meds, etc), it is fixed. I don’t think they are purposely withholding the information of the long-term effects, they just don’t know. There needs to be more education and training for doctors that are treating women who have developed preeclampsia or HELLP.
Something I learned from this experience is to be a better advocate for myself. Speak up when something isn’t right or I am not getting the answers I need. I have also learned how to find the resources to help me get the medical care that I need.
Tell Me About Preeclampsia Preventions
What am I doing going forward?
Getting answers by setting up appointments with doctors and specialists to check up on my health. I will be reaching out to other survivors to tell me about preeclampsia and what they did to get answers from doctors. I have going to be requested my medical records so I have all the information.
Below are the resources I have used to learn more about the long-term effects. The list has Instagram accounts of survivors and advocates as well as Facebook groups. The list also includes the Preeclampsia Foundation’s website. The Foundation’s website is a treasure chest of information for survivors and their families. These resources have taught me everything the doctors didn’t tell me about preeclampsia. Be sure to follow me on Instagram, Facebook, Pinterest, and my newsletter because I also share more about what doctors didn’t tell me about preeclampsia.
Tell Me About Preeclampsia Resources
Instagram accounts:
Websites:
Facebook Groups:
Want to stay up to date with my latest interviews?
Be sure to subscribe to my newsletter. I am also on social media through Instagram, Facebook, and Pinterest.
If you are a preeclampsia survivor or HELLP syndrome survivor and would like to share your story, please contact me through email at courtney@knockonmotherhood.com. I would love to share your birth story and keep spreading awareness. I am trying to gather as many preeclampsia survivors’ birth stories as possible to spread awareness.
If you are a preemie mom, I would also love to share your story. Please contact me through email at courtney@knockonmotherhood.com.
Not only can you read my words, but you can also listen to me too! Here it is the Knock on Parenthood Podcast!
Doctors didn’t tell me about the mental and emotional effects that I would end up going through once I got preeclampsia. I really don’t blame the doctors, everyone’s experience is individual. Journaling is a great outlet that I have been able to utilize in my life, and I encourage you to use a journal. Click on the image below to buy My Therapist Told Me to Journal: A Creative Mental Health Workbook or browse other options to start understanding your mental health.
Knock On Motherhood is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to amazon.com
Fellow preeclampsia and Stage II HELLP Syndrome survivor here. My daughter was born at 26 weeks as a result. Everytime I run into another preeclampsia or HELLP survivor I feel so blessed. Please know that you’re not alone and that there’s a tribe of other survivors rooting you on.
Thank you for your kind comment, Ebony. I have loved being able to connect with other survivors through my blog. It is really nice to know I am not the only one to have gone through something like this.
Fellow preeclampsia and Stage II HELLP Syndrome survivor here. My daughter was born at 26 weeks as a result. Everytime I run into another preeclampsia or HELLP survivor I feel so blessed. Please know that you’re not alone and that there’s a tribe of other survivors rooting you on.
Ebony, thank you for your kind comment and support.
I’m so sorry you had such a traumatic birth experience, but I’m thankful that you are choosing to make the best of it by learning all you can and paying it forward. That’s inspiring!
Thank you so much.
You are a strong girl. Anyone can take inspiration to fight back against all the odds from your story.
Thank you so much
Thank you for sharing your experience and spreading awareness! This is so important. Motherhood is tough as it is, but to go through something so traumatizing and have to still deal with the after-effects of it is a lot.
Thank you so much.