Katie Nelson

Katie is a 21 year old women who is living with endometriosis and she is the one in 10 people with a uterus who have this chronic illness. She’s remained a fierce advocate for reproductive health and continues to share her personal journey through social media to raise awareness. 

Many people are unaware of what endometriosis is and how it affects the body. 

Endometriosis is a reproductive disorder where tissue similar to the lining of the uterus grows outside of the uterus. The tissue adheres to surrounding organs, such as the ovaries, bowels and bladder and has been found as far up as the diaphragm and lungs. Unlike typical endometrial tissue, these adhesions have nowhere to exit your body during your period, which can lead to symptoms like inflammation and bloating, increased pain and excessive bleeding, which may persist throughout your cycle.

When we asked Katie how endometriosis affects her on daily basis, she told us that she’s limited in what she can do, as her symptoms can flare at any time. She is required to use some form of pain management everyday, which includes, medications, heating pads, etc. Endometriosis has also affected her employment - her body is unable to handle sitting as a desk for prolonged periods of time and she often has to take time off work when her pain is unbearable. She explained that some days she feels trapped, as she’s not able to leave her bed due to pain.

She wishes people knew how unpredictable chronic illness can be. She may be fine one minute and able to make plans, but then finds herself cancelling last minute that day because of increased pain. She wishes people knew that endometriosis wasn’t just a bad period - nobody enjoys cramps but the kind of pain that she and many others experience, is the kind of pain that puts your life on hold, leaves you drained, and takes an emotional toll. This is why she thinks the kindest thing people can do for her is to have compassion. Her closest friends understand the nuances of the illness and it has made all the difference. 

When asked what advice she would give to people navigating the medical system, she said:

“My biggest piece of advice on navigating the medical system is to be persistent. It typically takes 10 years of symptoms for most people to get this diagnosis, which usually leaves them around age 30. I was diagnosed at age 20 because I wouldn’t stop until someone helped me. I saw multiple doctors who dismissed me, told me I was fine or that it couldn’t be that bad. I begged for ultrasounds, blood tests and surgery until I got it, and I was right about what was going on in my body. I recognize my privilege in being able to access that level of health care as well, and am so grateful for the online community who supported me through that process.”