Where HAE and perimenopause meet, hormonal help is off limits

Living with hereditary angioedema (HAE) already feels like walking a tightrope — a single misstep, one trigger, can be a flare away from losing your balance. When you add womanhood, roller-coaster hormones, and perimenopause into the mix, that tightrope suddenly feels much thinner.

For “typical” women, the hormone estrogen offers stability. It can regulate mood, sleep, and even bone health. But for women like me — not so typical — estrogen is an enemy disguised as a solution. A wolf in sheep’s clothing. It can make my disease worse.

When my perimenopausal symptoms began, I sought help. I explained the night sweats, the brain fog, the mood swings that could turn laughter into tears in a heartbeat. The answer, “Have you considered birth control?” felt reflexive, arriving before the doctor had even glanced at my chart.

For women with HAE, a suggestion like that isn’t harmless; it’s potentially dangerous. Estrogen-based therapies can trigger more frequent and severe swelling attacks. What’s meant to help balance one system can completely unravel another.

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Like a ship taking on water

Along with HAE, I also live with multiple sclerosis (MS) and bipolar disorder. Each has its own symptoms, medications, and complications, and each has a mind of its own. But they all seem to feed off each other when my hormones shift out of rhythm.

When estrogen is off the table, I’m left without the usual tools to help regulate my body that might bring relief. That means I have to face perimenopause, bipolar mood shifts, and MS flares all at once. Those same hormonal changes can intensify my mental health symptoms, triggering mania, depression, and anxiety that ripple out into every corner of my life. It’s like living in a constant chain reaction: Hormones affect my mood, my mood affects my sleep, my sleep affects my fatigue, my fatigue increases my stress, and my stress triggers an HAE attack. Each condition presses on the next until I’m left trying to patch up the holes of a ship that’s taking on water from every direction.

Then comes the guilt. The guilt of falling behind — on work, on motherhood, on friendships, on advocacy. The guilt of saying no when I wish so much to say yes. Canceling plans because I’m swollen, too tired, or too emotionally unsteady to show up. Watching life keep moving while I stand still, trying to get through another flare, another crash, another round of exhaustion I never asked for.

Some may see strength in how I somehow keep going, but they don’t see the guilt and shame that come with it, or hear the quiet voice that says, “You should be doing more.” I question myself constantly about whether I’m failing my children, my responsibilities, myself.

Until we get the healing done

In small doses, I’ve been trying to learn to forgive myself. Sometimes, the best I can do is get out of bed, take my medication, and try again tomorrow.

The hardest part of survival mode is that it doesn’t feel like surviving. It feels like barely keeping up while the world expects you to thrive. It’s a vicious cycle of trying to meet expectations while your body demands rest and your mind begs for the stability your hormones simply won’t allow.

There’s still so much that needs to change about how those in medicine view women like me, who are living at the intersection of chronic illness, rare disease, and mental health. We need and deserve care that considers the whole picture. We need providers who understand that our hormonal health isn’t separate from our mental and physical health. It’s woven into it.

Until that kind of care exists, I’ll keep showing my vulnerability and using my voice to make space for those living in the margins because living rare as a perimenopausal woman isn’t for the faint of heart. We’re just trying to hold it all together while our bodies constantly challenge us to adapt.

I struggle to carry my guilt, grace, and grit in the same breath. Surviving when it feels impossible, in that gray area where strength and struggle coexist, and simply making it through the day is its own kind of victory.

Our stories aren’t isolated; they’re threads of resilience, woven together with truth, pain, and perseverance. By embracing the gray and speaking up, we remind the world, and ourselves, that living rare is still living fully.

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.