My Endo Journey: I Am Not My Diagnosis

The month of March is endometriosis awareness Month. Endometriosis is a medical condition where tissue similar to that which normally lines the uterus, grows on other parts of the body. It’s a chronic illness that affects 1 in 10 women globally. I am among the women living with Endometriosis.

I woke up in pain this morning and was compelled to write. Not for sympathy, but to create awareness on this illness that affects women from a young age. I’ve always had painful menses since my first cycle when I was 13. I thought that the pain was normal because that’s what I was told, and that it only goes away when you give birth, lol. Though it’s normal to experience some discomfort during the menstrual cycle, pain that disrupts day-to-day functioning is not normal, and nobody should be shamed for being in pain. Our bodies are susceptible to illnesses.

The symptoms of endometriosis are heavy bleeding during the menstrual cycle, pain (before, during, and after the cycle), abdominal pain, backache, cramps, pain (before, during, and after a bowel movement), nausea, running stomach, fatigue, painful intercourse, gut issues, brain fog and infertility, among others. These symptoms vary from person to person.

When misdiagnosed, some individuals have been treated for conditions that present similar symptoms e.g. Irritable Bowel Syndrome, or sometimes, due to the advanced knowledge needed to make a proper diagnosis, some individuals have been shamed that ‘it’s all in your head’. Living with pain that cannot be easily seen can make the journey lonely for the individuals, not to mention the financial dent in that package.  

The good news is that some gynecologists have taken an extra step to understand endometriosis. Such doctors see and believe their patients. They first connect with the patient before offering any treatment, since they understand that every individual is unique. This makes the journey more bearable since you’ve got someone who gets you. That is what my gynecologist did.

She even helped me understand the condition further and took an extra step to offer me suggestions on how to still find stability while receiving treatment. She emphasized the importance of receiving holistic care, which means seeing other health providers since endometriosis has the potential to affect other areas of one’s health too. For instance, one may need to work with a physiotherapist who specializes in supporting endo-patients since endo-pain can affect the pelvic floor which causes intense pain when using the bathroom or even during intercourse.

This condition can be debilitating and can affect one’s mental well-being. With this, walking with a trauma-informed therapist and sometimes taking psychiatric medication, supplements, and having a supportive community go a long way. Talking to fellow endo-warriors will remind you that you’re not insane and you’re not alone. Watching some of my friends brave through pain inspires me to show up for myself.

Some days endo wins, but on other days, I win! Knowing what works for you makes it easy to still thrive amidst the challenges that come with endo. I have learned to slow down to accommodate my health especially when my energy has gone down. I have learned to check on foods that would trigger pain and only eat what will help reduce inflammation in my body.

For years I lived feeling sorry for myself because of the pain, but last year I reminded myself that ‘I am not my diagnosis’. The diagnosis is part of my story, it isn’t the main story.

The endo journey has taught me the importance of knowing my limits and accepting and living by them. I have also learned to appreciate small wins. For example, I may not have the capacity to run errands with full energy as I did in the past, but I can manage small duties in my house like making my bed and doing the dishes.

The days I can’t stand up straight have taught me to appreciate moments when I can take a shower and stand with no pain. When I cannot leave my bed, I’m grateful that I can support my back and work on my computer while taking breaks. On days that I cannot sit upright, I sing till I sleep.

The endo journey has taught me to see life from a different perspective, I have shifted my goals many times. I stopped waiting to do life ‘until I recovered’. I have learned to be present and appreciate the support and care I receive.

Sometimes I wish for a pain-free life. And sometimes I wonder: what if my current purpose is to still have hope amidst pain? I have come to appreciate the power of the mind and how my response to self-limiting thoughts has the power to give me sanity no matter the intensity of the pain.

One of the prayers I made to God was if I have to bear the pain for some time, then He must give me a cheerful spirit amidst the pain and He did. I guess that’s the power that keeps me going, joy amidst pain.

I’m grateful for employers who offer remote work options, it eases life for people living with endo since flare-ups are unpredictable.

Thank you to individuals who make life easier for people living with endometriosis.

To the sister living with endo, you’re not your diagnosis, there’s more to you than your pain. You’re not alone. Thank you for choosing life. 🎗

Love,
Faith