When heavy menstrual cycles complicate dysautonomia
Significant blood loss can make dysautonomia symptoms harder to manage
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Just when I thought I could finally cancel my frequent flyer club membership with our local emergency department, I found myself back there for the first time in a record seven months!
My last visit was due to a frightening reaction to an iron infusion last winter, and I was hoping to avoid another trip for a bit. Unfortunately, though, I’ve been struggling with increasingly heavy menstrual cycles, and each month seems to take a little more life out of me. I do my best to slow down and listen to my body’s pleas for rest, or else I find myself dealing with some pretty unpleasant autonomic symptoms. Living with hypermobile Ehlers-Danlos syndrome (EDS) and dysautonomia certainly keeps things interesting.
A few days ago, I woke up exceptionally tired, weak, and dizzy in the midst of another incredibly heavy menstrual cycle. Along with the concerning amount of bleeding, I was short of breath and far more fatigued than usual. Concerned and not liking how I was feeling, I called my OB-GYN’s office. After speaking to the nurse about my symptoms and increased blood loss, she recommended I head straight to the emergency room. I wasn’t particularly excited about another ER visit, so stubborn me decided to try urgent care first.
After waiting for a very long hour, I finally made it into an exam room. The doctor was an answer to any chronically ill person’s prayers: attentive and genuinely concerned. As she was listening to my breathing and asking me to take deep breaths, somewhere around the third inhale I became so lightheaded that I nearly passed out, and my blood pressure plummeted — yay for dysautonomia. Immediately concerned, she recommended I go to the ER by ambulance. I declined the ambulance but agreed to head to the hospital, feeling pretty awful and increasingly worried about how the blood loss was affecting my body.
A challenge for many women with EDS
For those unfamiliar with dysautonomia, it’s an umbrella term for conditions that affect the autonomic nervous system, which regulates functions like heart rate, blood pressure, and digestion. I have postural orthostatic tachycardia syndrome (POTS), a form of dysautonomia that affects me terribly. I struggle with low blood volume and difficulty maintaining adequate blood flow, so significant blood loss can make those symptoms even harder to manage. Since October was Dysautonomia Awareness Month, I wanted to raise awareness of how dysautonomia can complicate heavy bleeding and make it harder to recover. It feels like my body works twice as hard to manage things that should happen automatically.
So, by the time I arrived at the ER, I was utterly exhausted, uneasy about how my body was responding, and desperate for some answers. The nurses were wonderful, attentive, and kind, and I genuinely appreciated their care. The doctor’s approach, however, felt more brushed off than I’d hoped. After ordering tests and evaluating me, the doctor explained that yes, my iron was low, but my body seemed to be handling it OK. I received fluids and care before being sent home with the general advice that I needed to choose a route to reduce the bleeding.
I understand it’s the job of ER staff to rule out anything immediately life-threatening, but I couldn’t help feeling discouraged by how the day unfolded. I’d gone from the OB-GYN nurse feeling uneasy about my blood loss, to the urgent care doctor recommending an ambulance, only to be told I was stable enough to go home. I knew there wouldn’t be an immediate fix, but after nearly passing out, I sure hoped for a little more insight into what was happening to my body.
Heavy menstrual bleeding is a significant challenge for many women with EDS, and I’m not sure it gets discussed nearly enough. Heavy periods can have many causes, but menstrual difficulties are all too common with EDS, and dysautonomia can make things even more complicated. My last two ER visits have involved dysautonomia-related symptoms alongside problems with iron deficiency and heavy menstrual bleeding. It’s difficult to know how much of what I’m experiencing comes from blood loss, low iron, POTS, or some combination of everything. What I do know is that the exhaustion, dizziness, and weakness make ordinary daily activities feel overwhelming.
I share all of this because I know I’m not the only lady with EDS struggling with these issues. Being stable enough to leave the ER doesn’t necessarily mean you feel well or that the underlying problem is resolved. We need to keep asking questions, following up with our doctors, and advocating for ourselves when something doesn’t feel right. I hope sharing my experience helps raise awareness of dysautonomia and the added challenges EDS-related heavy menstrual bleeding can bring. Hopefully, I can go another seven months (or longer) without renewing that ER frequent flyer membership!
Note: Ehlers-Danlos 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 another 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 Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
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