Bring Awareness to Endometriosis: What 1 in 10 meant to me
Let me paint a picture for you: I am curled over in pain, Oreos and peanut butter within reach, sappy romantic comedy playing in the background; though the pain makes it impossible to concentrate on whatever is happening in the movie. Heating pads applied, Ibuprofen administered, and still it is impossible to find a position that could be remotely comfortable even for a few minutes of relief. Mentally, I am a mess… there is nothing calming about chronic pain, and the current situation means I am probably missing school or work which is adding a whole level of stress I cannot handle. I feel defeated and helpless because no approach has helped in the past. Tears are rolling down my face and its nothing unusual, as a matter of fact, this is a part of my monthly routine.
My name is Steph and I’ve suffered with painful periods and chronic pelvic pain for approximately 15 years. I am here to tell you my story, the road I have traveled, and hopefully reassure you that if you have my condition, you are not alone!
When you get your first period, you’re told what to expect and while it is a very beautiful part of life, it’s not very easy. No one prepared me for what I would be facing and I think a lot of that had to do with no one could have predicted that this was what I would be feeling.
By the age of 15, my mother had witnessed me suffer enough pain. At this point I had been getting my period for about three years. Heavy, painful, and horrible. My mother knew something just was not right. She advocated for me to see an OB GYN and address the issue, previous attempts with my primary care doctor were quickly dismissed. She took me to another doctor and the response I got (which I received too often) was “menstrual side effects aren’t fun but are normal.”
Luckily my mother was not satisfied with that answer and pushed for more than just that, the next doctor suggested I be put on a birth control pill to regulate my periods. The doctor warned that it may take a few months for me to see a difference and to give it time. After a few months, the only difference I found was that I could tell when my 6 days of hell were coming. The timing was regulated but there was nothing about the period itself that was minimized.
A few months later, we were back in the office. My mother told my doctor how my pain level is simply just not normal. As found with most chronic pain sufferers, my pain tolerance is pretty high but I was missing school monthly because I couldn’t concentrate with how much pain I was in. I was a nerd in high school and loved to learn, my mom knew this was not normal for me to be out consistently!! Something more had to be going on! At this point my doctor prescribed mild pain medicine to help me get through my period. Still not really dealing with issue at hand. Finally, at age 17, I was diagnosed with endometriosis. Endometriosis is a condition that occurs when tissue similar to the inside lining of the uterus is found outside of its normal location, causing chronic pain. About 1 in 10 women have endometriosis. Since that time, I have been on different hormonal treatments, had surgery, started a family, but most of all I have learned to advocate for myself.
What I hope you take from my story is that YOU are the only person who can advocate for yourself in regards to what you are going through. No one knows your body like you do. If you take anything from my story is that there are so many options out there for relief, you have to be patient and you have to have a medical team who is willing to work with you so you can manage your pain. I hope that you don’t settle. Don’t settle when someone says that you can never have children, there are options even if you have infertility issues to create a family. Don’t settle when you try one thing and it still doesn’t alleviate the pain, and please do not settle when someone brushes it under the rug as normal menstrual pain. Lastly, know that I wouldn’t have pushed for other options or have been as educated on what was available if I didn’t have a great deal of support from my mother and online support groups. Finally, please know that anyone with endometriosis is a warrior and you do not have to fight the battle alone!