The Relationship Between My Menstrual Cycle and Sickle Cell Disease

Mary Shaniqua avatar

by Mary Shaniqua |

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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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Note: Sickle Cell Disease 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 Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.

Comments

Stephanie avatar

Stephanie

Love this! You are so on point and this is exactly what I've experienced. I see you do the same thing I do! I'm 50 years old now and you're right to say that you don't want to spend the rest of your menstruating years dealing with a crisis each month. You are on the right path and we always have to make adjustments in our lives due to SCD no matter how big or minute it may be. What's normal to others isn't so "normal" for us. Sharing our experiences certainly helps me mentally as we ( or I) navigate through this life. Be well!

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Dayo avatar

Dayo

I used to have HORRIBLE periods - heavy bleeding and debilitating cramps the first 2-3 days. I also have PMDD. When I started taking hydroxyurea, I got an IUD (Mirena) for birth control, which drastically changed my periods (shorter, lighter, less pain). I am also now on a progestin-only oral contraceptive for my PMDD, and now at the age of 36 my periods have basically stopped.

Are you able to try a form of birth control to help with your periods? Avoid any with estrogen, as they pose a thrombotic risk.

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Angela avatar

Angela

Wow! Sometimes you feel like the only one going through things until you read things like this which is rare. My first menstrual cycle landed me in the hospital at 11 years old and I have been having issues ever since. From heavy bleeding to excruciating pain to leg numbness, you name it. Now 40, I still have issues around my cycle but have learned that it is usually affected by the things that I eat or my hydration level. With that said, I try to stay extra hydrated, leading up to my cycle and throughout. I usually drink coconut water for extra electrolytes and in a pinch a sports drink. I also drink double strength black tea which helps the cramps (sometimes). I will still have the occasional trip to the hospital :( and nothing cures the fatigue. It's good to recognize our triggers in hopes to reduce the crises as much as possible. I appreciate hearing about your experience and the previous comment on this post! I wish everyone well!

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