Unexplained angioedema

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On March 11, 2022 I woke up with very swollen lips thinking I was having an allergic reaction to some sort of product I was using. I had a rash on the roof of my mouth that went into my throat a little. I called my dr and went into a little clinic to be evaluated and was prescribed a steroid. The steroid helped but did not completely control the swelling. I followed up with my pcp a couple of weeks later who referred me to an allergist. I was advised to not stop taking antihistamines since I was still having episodes. It took about 2 weeks to get in with the allergist, and by that point the episodes were happening more frequently. After describing all of my symptoms to him, he thought this was happening internally. Over the past 2 years, about 7-10 days before my period I’ve been getting vulvar irritation with dryness and a discharge with an odor, swelling in hands and feet, and now what seems to be angioedema of the lips. Everything seems to calm down once my period ends (minus the lip swelling since it has only been 2 months, I don’t have an exact cycle with that yet). On 05/02/22, I woke up with extremely swollen, and painful lips (exactly one week before my period started). I can’t seem to get the swelling under control, they constantly feel like they are burning from the inside out and are almost soggy feeling. The swelling will go down, but never completely. Every substance that touches them seems to trigger it at this point and I am maxed out on antihistamines. All of my labs have come back normal. He ran a full autoimmune panel and some labs that detect internal swelling, and nothing. He also did allergy testing through labs since they don’t want me stopping the antihistamines, and all normal.

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  • Posted

    update: my period ended on saturday and my lips are finally healing after 2 weeks of an active breakout.

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