December 17, 2019 at 7:43 pm #14234Jenny LivingstonKeymaster
On Instagram, I’ve started a series called Real Talk Tuesday where we delve into the parts of CF (and life in general) that are sometimes difficult to talk about. Join the conversation on Instagram or here in the forum.
𝐑𝐄𝐀𝐋 𝐓𝐀𝐋𝐊 𝐓𝐔𝐄𝐒𝐃𝐀𝐘: 𝐂𝐅𝐓𝐑 𝐌𝐎𝐃𝐔𝐋𝐀𝐓𝐎𝐑𝐒 𝐀𝐍𝐃 𝐑𝐄𝐏𝐑𝐎𝐃𝐔𝐂𝐓𝐈𝐕𝐄 𝐇𝐄𝐀𝐋𝐓𝐇
Fair warning: if you’re uncomfortable with words like “cervical mucus” or talk of menstruation, you should probably just keep scrolling.
But if you’re a woman with CF who is currently on a modulator, switching modulator drugs, or about to start taking one for the first time, I hope you’ll hang out and chat about this.
One of the first things I noticed when I started taking Trikafta was not a change in my breathing, cough, or amount of sputum I was producing — it was a significant change in my 𝐜𝐞𝐫𝐯𝐢𝐜𝐚𝐥 mucus.
I didn’t really mention it to anyone, and kind of wondered if it was just something weird my body was doing. But then I started seeing other women post about in private groups and I realized this is a thing!
We talk about the purge of mucus from our lungs and even our bowels, but nobody is openly talking about the vaginal purge! (#sorrynotsorry for that phrasing)
Thick cervical mucus and irregular ovulation/menstruation are common barriers to pregnancy for women with CF. But these drugs are changing the game! My periods regulated on Orkambi, and my cervical mucus has significantly thinned on Trikafta.
For some, pregnancy would be a miracle. But for others… not so much. An unplanned pregnancy can significantly affect a woman’s life and health. So we need to be careful!
I hope that our doctors and CF teams are talking openly about reproductive health, especially in relation to modulators. If they haven’t had this talk, I encourage YOU to initiate the conversation.
As our bodies are changing, we may need to reevaluate our treatment and care plans. Some forms of contraceptive may be affected by these drugs (for instance, we know that Orkambi can make hormonal BC less effective) so it’s important to research and decide which one is best for you.
Women with CF, have you noticed reproductive health changes while on modulators? If you’re on Trikafta, what has your experience with this been?
December 19, 2019 at 9:58 am #14257Christina KolassaParticipant
The first time my son’s pediatrician heard about him being on the trial for Trikafta, he mentioned the unexpected issue of a change in reproductive health. I was a little surprised but it’s true, we need to re-evaluate how this amazing drug will impact all aspects of our lives! Thank you Vertex and Alex Abela, the scientist that created the molecule now called Tricafta.
- You must be logged in to reply to this topic.