Stroke on the Birth Control Pill at 21 Years Old

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Please be patient, my spelling and writing are difficult since my stroke. I should back up a little bit though. I started the birth control pill when I was 17. Partly, I was dating a guy and it was really serious, but also everyone else was taking it, so it seemed like the right thing to do. I was overweight a little when I first started taking the pill but gradually that got worse. Oh well, right?

I was on the pill the entire time I was in college. During that time, I was very stressed with different things: school, my boyfriend, being overweight and trying to figure out what to do with my life. I was 21, and I had one quarter left until graduation. At this time, I was taking Ortho-Novum 1-35. I had my stroke while I was on spring break. I was at home visiting my family and friends. It was March 27, 2005.

My boyfriend and I had a fight the night before so I was grumpy that morning. I hadn’t slept well.  My mom thought maybe I was getting sick because I was acting very tired. Around 10 am I went upstairs to shower. I got very dizzy in the shower and so decided to get out and lie down but instead I fell out of the shower.

My parents heard me fall and rushed upstairs. I remember my parents knocking on the door and my mom covering me with her robe. And my mom telling my dad to call 911. All I could say was “I don’t know, I don’t know “ over and over again when someone would talk to me. The paramedic saw my birth control pills on the counter and said he thought I was having a stroke. I don’t remember much after that, except going down the stairs on the stretcher and feeling like I couldn’t breathe as they intubated me in the ambulance. Then nothing.

I went to Harborview Hospital in Seattle and they were amazing. They saved my life. I had a very large stroke and at first the neurologists weren’t even sure I would survive. I was in intensive care for a little over two weeks and then in serious care for another week. I can remember waking up and thinking that I was having a horrible nightmare and freaking out when I realized it wasn’t a dream. My brain was getting swollen and they inserted a probe to keep track of the pressure. My sisters watched all this and were so scared. I had such kind nurses – one of them had a sister my age and washed my hair for me. I wish I could remember her name.

We never found out where the clot originated although the doctors did every test imaginable. All of the neurologists agreed that I should have never been on the pill and I should never take hormones again. All of my blood work was normal. My only risk factor was that I was overweight, and that was partly because of the pill itself. I never smoked or did drugs. So it seemed okay to take the birth control pill but it wasn’t. No one ever checked my blood pressure, weight or health after giving me the pill. I think women on the pill need to be monitored. No one really warns you about the problems with it. They just assume it will be all right.

When I was going to school, I was a history major. I was thinking about trying to get a job in one of the large archives. Or maybe I would try to be an author because I was a good writer. I thought I had found my niche. Now I have aphasia and it is so difficult to read and write. My mother is helping me to type this. When I read, I need to have the audio along with the book. Reading makes my brain so tired.

I thought I would have children, but now I am single and live with my parents. I’m pretty good with one hand but a baby would be difficult. I’m alive and walking around and many women aren’t. It’s not fair. Women need to be more aware of the danger. There really is no warning that this might happen to you. Doctors need to discuss what the risks are when prescribing the pill and follow up with appointments, not just hand you a prescription.

So, please be cautious because this could happen to you.

Real Risk Study: Birth Control and Blood Clots

Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.

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17 Comments

  1. Thank you for sharing your story and I will share it. I think people will listen more hearing it from a young adult. Doctors do not warn you about anything, they just give out the new medicine too easily. When my 16yr old daughter died, it never crossed my mind it was the pill, but when I called my OB and told her Theresa died, she knew instantly. I am so happy you have another chance, and I am so sorry you and your family went through that.

    1. Laura,
      I’m so sorry Theresa passed away. It shouldn’t happen. Did you do a survey? Family members can do it too! Get the word out, it helps. It’s amazing how many my friends are not taking the pill. But many of my friends are still taking it and I’m very frustrated! But one person can make a difference. Thank you for reading my story. It’s still hard but I am alive and I’m very very lucky.
      Annie

      1. Thank you. I have taken the survey and Theresa’s story is also on this site plus many other sites. She had factor V that she got from me. I never knew it even existed and never did the doctor mention a blood test that would have saved her life.

        1. OK I see your story. Wow. I tested it after my stroke too. My doctor was sure that was at was it. But it was negative. I don’t know if it was a good thing or a bad thing. It would be great if I was testing before taking the birth control pill though! So frustrating. I know it’s expensive to getting those testing but it’s worth it. Thank you for telling your story.

  2. Hi. I’m glad to read your story because it gives me comfort in knowing I’m not the only one. In July I went on a trip to TN from FL where I live and I guess sitting that long and being on the pill for 2 1/2 years (I was on beyaz) a blood clot formed and it went through my heart to my brain and caused a stroke. I just turned 27. They never told me the risks and my brain has been damaged and I have developed reflux veins and have to wear compression stocking my whole life. I also have partial vision loss. I am having so many tests done and am so overwhelmed by all of this. It’s so scary. I wish they would tell people on the pill you should be taking a baby aspirin a day and wear compression socks for long trips or sitting awhile but they didn’t they said only am I at risk when I get in my thirties or if I smoke 1 or more packs of cigarettes a day. It’s so depressing. Hopefully it’s gets better with time.

    1. Hi Cate,

      I’m really sorry to hear that this happened to you. At Hormones Matter we are studying blood clots in relation to hormonal birth control. The study consists of a survey answering questions about your blood clot diagnosis, your medical history, and lifestyle. If you would be interested in participating, please contact us at https://www.hormonesmatter.com/contact/ and we will put you on a list of study participants.

      Best wishes,

      Philippa

    2. Cate,
      I’m sorry! Shouldn’t be this way! It’s going to be better… I look at the study. And if need anyone to listen always open to talk!
      Annie

  3. Annie I know your family personally and remember your birth. You are an inspiring young women it’s good to put out the word! You may save a life! I took birth control from 18 to 24 and I smoked. I feel I dodged a bullet,. If I were a parent I would think twice of putting my daughter on the pill. You should blog you could really help and inform people. Love you xoxo

    1. Robbyn, thank you for listening to my story! My mom and you were smoking and taking the pill. I’m glad you guys are both alive and healthy! Love you.

  4. Annie, I’m so sorry this happened to you! Something similar, but less severe happened to me this passed July. I was put on the pill at 16 to “treat” health issues. I’m now 26. I had a clot pass through my heart and into my lungs. They said I could have died if I hadn’t come into the ER struggling to breathe. The pill is so dangerous. Women need to be told about the very real risks to their health and fertility if they take the pill. Right now, I’m blessed to be alive. I hope that others will read stories like mine and yours and find alternatives to BCPs.

    1. Libby, i’m so glad you got it in time! Recently in my town a woman had the same problem. It’s just maddening. We are alive! And she’s alive too but so many women are not. Thank you for reading my story. Preventing it and sharing it is very helpful. Maybe some people don’t listen but one person could be alive and we did it!

  5. Wow, thank you so so so much for posting. I recently was consinplating whether I should or should not go on the pill, but I am so thankful for your story. You are am inspiration. Pursue public speaking, write a big, God still has so much I store, and so much he wants to use you for. What am impact full service announcement.

    1. I’m glad you thought about it. It would be nice speaking about it but I have a little bit of shyness and aphasia. I need to overcome it! Thank you for listening!

  6. Wow.. What a story.. Good for you for coming back and fighting to make people aware these aren’t just risks they could be realities! Thank you for sharing, and your mother for helping you.

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