The Relationship Between My Menstrual Cycle and Sickle Cell Disease

I wrote about feeling unwell without any apparent cause in September, and then again last month. So, guess what? I was recently sick again.

But in my quest for silver linings, I should stress that I think I have finally identified the cause: my period.

The U.K.’s National Health Service defines a period as “the part of the menstrual cycle when a woman bleeds from her vagina for a few days.” Thanks to my avid note taking, I discovered that in the week leading up to my period, I experience a sickle cell pain crisis and extreme fatigue, which last until I am at least halfway through my period. This seems to have started recently, though I am unsure what the catalyst was.

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For many years, I experienced very short and light periods. I didn’t mind. Sickle cell gave me enough problems, so a problem-free period seemed like my God-given right!

In 2018, I had a pulmonary embolism, which resulted in me being on blood thinners long term. This caused my periods to become significantly heavier and last a bit longer than the two days I was used to. I also began to experience the menstrual pain I have heard women complain about all my life. Again, in my quest for silver linings, sickle cell has given me a rather high pain threshold, so I considered my menstrual pain my “light work.”

These days, my periods seem to be preceded by a weeklong sickle crisis, and then I have pain and lethargy during the course of my period. I shared my findings with my medical team and was advised that this is quite common. Apparently, many women with sickle cell see a correlation between their menstrual cycle and sickle cell crises — particularly those who have been menstruating for longer.

This has now happened three times. Each time, I had to be admitted to the hospital to get the crisis under control. This leaves me slightly worried about a plan going forward. The reality is that, absent pregnancy, I will likely have a period every month for at least the next 15-20 years. I cannot feasibly go through this type of crisis every month and continue to lead a normal life. Something has to give, but I can’t stop working or even drop to part time.

With winter approaching, I plan to mostly forfeit outdoor socializing to give my body time to adjust to this change. My hope is that by minimizing my energy output, I can save my energy for the time of month when my body seems to need it most.

I appreciate that this is a short-term remedy, and there’s little to no evidence that it will reap the desired results, but I have to try something.

Forfeiting socialization is a big step. I hope my mental health doesn’t decline as a result. But I also know I’m capable of it after all the lockdowns over the past 18 months. Admittedly, this may be slightly harder, as I will need to proactively decline invitations and cancel plans that have already been made — at least for a short time.

I have not quite figured out what steps I will take to get my body accustomed to the pain. Perhaps it will simply happen over time.

Have you noticed a correlation between sickle cell and your menstrual cycle? How do you cope with it? Please share in the comments below.

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