Dom98

180d

This may be a long shot. I’m 24 with cystic fibrosis and when I was 15 I started coughing up blood, I was told it was from infections. Well it’s been almost 10 years. I’ve seen over 30 doctors for this, and the closest diagnosis I came to was endometriosis tissues in my lungs. I cough up blood every time I get my period, my hormones are horrible but I can’t take oral birth control because I’m at higher risk of developing breast cancer (I already have the complex cyst) is there ANYONE out there who has this issue 😞 I’m mentally exhausted, I have panic attacks when it happens. I freak out every month wondering how bad it’s going to be. I’ve tried so much but now I’m so limited on the last bit of options. I just need to know if anyone else has this or even lung bleeds in general. What do you do for them?

Hemoptysis

Cystic Fibrosis (CF)

Gastrointestinal Hemorrhage (GIB)

Progesterone

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  • CfDiabetic1

    180d

    Hi there, I was diagnosed days after birth and Ill be 56 in November. So I’ve been in menopause for 5 years now. And even when I was still menstruating my periods had nothing to do with my lungs. BUT, I cannot believe that your CF doctor has not told you what you have as it is quite common in adults with Cystic Fibrosis. Fortunately I’ve never experienced bleeding from the lungs. But quite a few of my Facebook CF friends experience this quite often and some to the point where they have to be rushed to the hospital although that happening is a lot rarer. But Hemoptysis (huh·MAAP·tuh·suhs) is the medical term for coughing up blood. It happens in adults with cystic fibrosis more than in young children. Regardless of age, About half of all adults with CF occasionally find streaks of blood in their mucus. And some experience more blood than others.

    • Dom98

      180d

      yes I was told about it being hemoptysis. But that it’s regulating with my cycle is more under endometriosis. That my bleeds are not of normal type. I have met a few friends who have coughed blood once or twice but I could blood every month on the same days (3 days into my period) they did a study and it correlates with my highest hormone levels, but the only solutions I’ve been told was to go on progesterone and estrogen but then it risk my chances of breast cancer, the other option I was told was to have a hysterectomy but at 24 I’m not comfortable doing that.

      • CfDiabetic1

        180d

        I can understand that.

    • Dom98

      180d

      I have more than streaking, I cough up a quarter of a cup to half a cuff each time, I just don’t know what else to do about the bleeds, they won’t cauterize each time because it doesn’t work and to do it every month is risky

      • CfDiabetic1

        180d

        those friends of mine who complain about it also explain it that it comes out to about as much as what you are saying from their lungs. But what has your pulmonologist said about that? I know you are more concerned of course about the periods which unfortunately I can’t help you with as I never had the issue. I’m sorry.

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