Why symptoms can feel worse around your period
🩸 Many people with spinal or cranial CSF leaks notice their symptoms flare up just before or during their period. If you’ve been wondering, “Is it just me?” it’s not. This is a pattern we hear about often and while the research is still catching up, there are some likely reasons why this happens.
Hormones and fluid balance
💧 Throughout the menstrual cycle, hormone levels (especially oestrogen and progesterone) rise and fall. These shifts can influence:
- Fluid retention
- Blood vessel tone and circulation
- Sensitivity to pain
These changes might not cause the leak to worsen but they can make your usual symptoms feel more intense or harder to manage.
Changes in CSF dynamics
🧠 When you’re leaking CSF, your brain and body are constantly trying to maintain balance. Around your period, even small hormonal or fluid shifts can disrupt that balance. You may still be in a low-pressure state but the symptoms can feel different or more pronounced for a few days.
It can be frustrating especially if your symptoms become less predictable or feel like they are flaring for no clear reason.
Inflammation and prostaglandins
🔥 During menstruation, the body releases prostaglandins, hormone-like chemicals involved in inflammation. These can increase pain sensitivity and may make any existing headache, neck pain or fatigue feel worse.
What about high pressure?
📉 In the context of a CSF leak, this monthly flare does not usually mean you have suddenly gone into high intracranial pressure. It is more likely that you are leaking but your usual symptoms feel more amplified or unsettled due to hormonal influences.
Could hormonal treatments help?
💊 Some people with leaks choose to explore hormonal options like the contraceptive pill to help manage these monthly symptom swings. For some, stopping periods altogether reduces the severity of monthly flares. Others may not notice much difference.
If you are considering this, speak to your GP or specialist. It can be helpful to track your symptoms across your cycle before and after making changes so you can monitor any patterns.
Things that might help
🗓️ Track your cycle
Keeping a symptom diary across the month can help you prepare for difficult days and notice what works for you.
🧘♀️ Be gentle with yourself
If you notice you always feel worse at a certain point in your cycle, try to adjust your plans or pace yourself during that time.
💦 Stay hydrated
Supporting your overall fluid balance might help you feel a bit more stable.
🫶 Know you’re not alone
Others are going through this too even if it’s rarely talked about. Feeling validated can go a long way.
Final note
Even though this topic isn’t often mentioned in medical settings, it comes up regularly within the leak community. Your experience is valid. If your symptoms consistently feel worse during your period you are not imagining it and there are steps you can take to understand and manage it better.
External Links
Hormonal Fluctuations and CSF Leak Symptoms
This case underscores the importance of recognising the potential link between hormonal fluctuations during the menstrual cycle and idiopathic intracranial hypertension (IIH), which could lead to spontaneous cerebrospinal fluid (CSF) rhinorrhoea.
🔗 Read the full study (Wiley Online Library)