Endometriosis is a condition that is not well known, but one that affects 1 in 10 women, most of whom are unaware of the chaos that is happening in their own bodies. After almost 15 years of pain, I can finally say that I am an endo sister. I have finally been diagnosed. I sit here now with four holes in my stomach after having keyhole surgery to remove a cyst the size of a grapefruit and to clean up the endometriosis that left my insides mangled together and my fertility in question. And I feel a sense of relief! Sore, but relieved that I have been taken seriously and am finally getting treatment for something I have struggled with for most of my life. Relieved that my future as a mother is still intact.
But what is endometriosis? It is when the lining of your womb, which makes up your menstrual flow, grows elsewhere in the body. When it is time for your period, this lining sheds blood like it would do in the womb except the blood gets trapped in your body and can then turn into a sticky glue that adheres to your organs, causing pain and reducing fertility.
For me, heavy periods were a normal part of life. I had started my first period at 8 years old, and from then on, they were a constant pain every month. As I got older, the heavier and more painful they became, until one day when I was 15 years old, the pain had gotten the better of me. I woke in the morning with a horrible cramp in my stomach. Great, I thought, I have my period. But as the morning progressed, the pain didn’t subside, and I found myself doubled over unable to walk. My parents, not sure what to do, tried everything to ease my pain. They thought I had just contracted a stomach bug, but when I threw up everything they tried to give me and then passed out from the pain, they knew something was up. A trip to the ER and I was sent home, having been told that I had low pain tolerance and needed to suck it up, because after all, period pain is a normal part of being a woman.
From then on, I would fear that time of the month. It was always a lucky dip. Was it going to be a normal period this month, or was I going to suffer? I never knew when it would come, and what was worse was that no one would take me seriously. I made countless trips to the nurse at school or the ER, and each time I was told it is a normal part of being a woman. I came to the point where I used to hide it. I’d hide myself in the corner until it passed because I was scared that people would think I was a drama queen, an attention-seeker.
Trying to hide it was difficult. When you are in so much pain that you are throwing up and passing out, it is hard for people not to notice. I was on my way to the movie theater with my mom, and I could feel it coming. I found myself drifting in and out of consciousness. As I walked into the theater, trying hard to keep up appearances, my body had finally had enough, and I collapsed to the floor. I saw the panic on my mom’s face as she tried to lift me up and call the paramedics. Surely, they would believe me this time, right? I couldn’t possibly be faking it. I was at the movies. I was having a good time! But to my disappointment, the paramedics scoffed and told me the same thing all the others had. It wasn’t until the manager of the theater took my mom aside and said, “This isn’t normal. Get her checked for endometriosis,” that I was taken seriously.
Endometriosis? I had never heard of it before, but to my dismay my doctors didn’t seem to know much about it either. Their approach was to put me on the pill and hope for the best. If that didn’t work well, then I just had to learn to accept it.
At times, it was just plain embarrassing. When you pass out and throw up while on the toilet in the middle of a workday and have to be escorted out with your underwear in full view, it is hard not to be embarrassed. But with each episode, I found a new person who was struggling with something very similar and came to understand that it was a condition that was slowly being recognized and was a lot more common than I was lead to believe. Heavy periods, ovarian cysts, excruciating pain each month, symptoms of IBS and problems conceiving are all symptoms of endometriosis, and if you suspect that you may have it, I am here to give you hope and encourage you to get the treatment you deserve.
Do not let anyone tell you that it is part of being a woman or to just suck it up! It is not normal to pass out from pain every month! It is not just part of being a woman, and no, you do not just have a low pain threshold!
It is estimated that endometriosis affects 6 to 10% of women, and there are still many out there who are unaware of this condition. I feel like I am lucky. Even though I suffered for a long time I am by far not suffering the most. A lot of my fellow endo sisters suffer daily, with their quality of life greatly diminished and their chances of becoming mothers taken away from them. My heart and my respect goes out to all of them, and I think it is our responsibility to create awareness of this common yet virtually unknown disease. Awareness of endometriosis has come along way in the last 10 years, but it still has a long way to go. If you would like to help or wish to learn more, visit the Worldwide Endometriosis March website. Any little bit helps.