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    • #17976
      Brittany Foster
      Keymaster

      This topic is more for the women in the group: regarding birth control methods and hormone replacement therapies

      Birth control or hormone therapy comes with it’s risks and benefits. For most of my life I had to be conscious of these risks. Here is a link to an article from the American Heart Association discussing birth control use.

      When I was in my early teens I was on birth control pills with estrogen because of problems that I had with my ovaries creating multiple cysts that would bleed and cause swelling. Eventually, I had to get off of these pills due to an increase in my blood pressure while I was on them. This increase gave me a terrible headache and more symptoms that I didn’t want to manage on top of everything. Eventually, I had both ovaries and both tubes removed due to them being swollen, scarred, and non functioning.

      Now that I do not have ovaries or tubes I am in menopause. I am also on a patch on the skin that delivers estrogen (a very small amount) to protect my bone health and keep from getting early signs of osteoporosis. I also use an IUD which was suggested by my care team because it has minimal side effects since the hormone is delivered right into the uterus and doesn’t get as much into the blood stream. This helps protect my uterus from uterine cancer which I am at higher risk for after being in menopause at a younger age. My doctors do not want me getting progesterone through a pill because of the possible side effects on the lungs and heart.

      I am curious, have you discussed birth control or hormone therapy with your doctors or care team? Were you impacted by the side effects of birth control or any type of hormone therapy? Did you have to gain approval from your PH doctor or cardiologists before taking something like this?

    • #17980
      Colleen Steele
      Keymaster

      I raised a boy with PH so I don’t have any personal experience to share but the following is what I have read about in a pediatric support group. Someone mentioned their daughter was approved by cardiology to receive a birth control implant called Nexplanon to help with severe menstrual issues and hormone levels. It sounds like IUD’s are the most commonly used for PH patients, especially for those on blood thinners because it helps reduce heavy periods. This is a pediatric group so many are using birth control to help alleviate period symptoms more so than to protect from pregnancy.progesterone. I hear it’s the estrogen that can cause problems with PH so these other forms I believe use progesterone. I don’t know if any of this helps but I thought I would share.

      • #17981
        Brittany Foster
        Keymaster

        Thank you Colleen,
        that is still great information to know. It definitely is important to mention these things to the doctor especially if women are using the pill or other types of hormones for regulation of heavy and painful periods. I know this can be such a difficult time of the month for many women. It was for me when I had it. Were you going to post a link or links to something? Just checking because the links didn’t show in the post.

        • #18025
          Colleen Steele
          Keymaster

          Brittany, I’m sorry I didn’t have any links to share but out of curiosity I looked up Nexplanon. It does look like it goes under the arm and maybe it is the one you mentioned has caused troublesome side-effects. https://www.drugs.com/nexplanon.html

      • #17986
        Jen Cueva
        Keymaster

        Here is the website for that implant, Nexplanon

        • #17987
          Brittany Foster
          Keymaster

          Thank you so much for that link Jen! I know it will help others too 🙂

        • #18028
          Colleen Steele
          Keymaster

          Jen, oops, I did’t realize you already posted a link. I just did too.

        • #18029
          Jen Cueva
          Keymaster

          No worries, Colleen!

    • #17985
      Jen Cueva
      Keymaster

      Great topic, Brittany!

      Prior to PH, i used birth control pills at a low dosage , mainly to help regulate my periods. Once I was diagnosed with PH, maybe within the year, my PH Doctor and Nurse discussed birth control options with me. I was given some educational material as well as general information as you’ve shared regarding the possible side effects of these pills on our hearts and lungs.

      I decided to go with an IUD and have had used one since. Mine has to be replaced about every 7 years. As I am peri-menopausal, I’m not sure if I will continue to use it or not. I will be discussing this with Gyne and PH team later this year. This is something that I think all female PH patients need to discuss with their PH team and work together to see what may work best for them.

      As Colleen mentions, I have found many PHriends use an IUD most often. I had to laugh at you saying you’re a mom of boys, hehe…you did offer some good information as I had never heard of that implant, @colleensteele

      • #17988
        Brittany Foster
        Keymaster

        There is one implant that I know of that goes in the arm and under the skin but from what I have heard some people just get terrible side effects with it and extra water retention. Not sure if it is the same implant that you’re talking about Colleen, but the one that I have heard more bad than good about is the one that gets put into the arm under the skin. The one that is under the skin is one that I personally would not be okay with. My sister had it and it caused her a ton of fluid retention (definitely something that I would not be able to tolerate any more of !)

        • #18013
          Jen Cueva
          Keymaster

          Brittany, I am not sure if it is the same one or not, but I do know that one of the first implanted birth control devices were known to cause more side effects and I had a friend who had to have hers removed after just a few weeks.

          I do know that with research and technology that the newer implants are improved and more women are using them. For myself, the IUD will continue to be my preferred method of birth control as I have not had any issues. As they say, “if it ain’t broke, don’t fix it”, LOL

          It isn’t like we have enough things to “fix” already, hehe

    • #18602
      Libby
      Participant

      I used hormonal birth control pills from age 17 to 23 and had NO idea it wasn’t recommended for heart patients. No one ever told me this, I found out after reading the warning label out of boredom. LOL I got off birth control because it was causing me to have weird PMS cycles and no sex drive at all. For a while I used the Daysy, a European device that is basically the rhythm method but more precise. I used the Daysy for a whopping 3 months before my dog ate it (not even kidding). But at about that very time was when I got diagnosed with PH and told I couldn’t have kids and that it would be potentially deadly for me to do so, so my husband got a vasectomy.

      I am so happy to be off BC. It did nothing but mess my periods up. I used to be regular to the day, now I can go months without a period and I believe it’s all caused by being on BC.

      • #18621
        Brittany Foster
        Keymaster

        Hey Libby,
        I’m sorry that you had that experience with birth control too. When I was on it (as a method to try before they took my tubes out) I was only 16 years old. I was just using it to try to help lessen the severity of my cramping and minimize ovarian cysts that ended up making me need my tubes out. Anyways, long story short, I had a TERRIBLE experience with all the kinds I tried. from worsening depression, mood swings, even feeling like there was no hope, etc. It took a huge toll on me mentally as well as physically. I retained a lot of fluid, gained like 15 lbs and just didn’t feel well at all. Now that I have both ovaries and tubes removed, I am balanced with estrogen patch and progesterone from my IUD that just gets delivered to my uterus vs the side effects of progesterone pills. There are so many things we have to be aware of as women with CHD that many unfortunately aren’t aware of. I’m glad you looked into this and that your doctors gave you the honest truth (even if it’s hard to hear)

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