My Endometriosis Journey

Around the time I started middle school, I noticed something troubling about my mother’s age. I realized that she was much younger than most of my friends’ mothers. So, I asked her how old she was when she gave birth to me. She said that she was twenty-three years old when she had me.

I asked my mom why she was so young, and she had two answers. Her first answer was that while I was unplanned, I was a happy accident. Her second answer was that she had to have children early or she wouldn’t be able to have them at all.

My mom has endometriosis, a condition where the same tissue that builds up on the inside of your uterus during your menstrual cycle builds up on the outside and on the surface of other organs in your abdomen. One of the possible symptoms of endometriosis is infertility.

Hero Copy Megan Charles / Her Campus Media

My mom started getting surgeries to treat her endometriosis at the age of nineteen. During these surgeries, her doctors realized that her endo was very severe and would impact her ability to get pregnant. They suggested that she get pregnant soon before the condition worsened; if she were to wait until she were thirty to try to have children, her efforts would have been futile.

My mom had me at age twenty-three and my brother three and a half years later. Shortly after she had my brother, my mother had a uterine ablation, a procedure that removed the lining of her uterus so that no more tissue can build up and the symptoms of her condition would stop.

Her story baffled me. It gave me a newfound respect for my mother for being so strong, and I realized that she must really love me if she was willing to go through all of that to have me. And then it dawned on me: if my mom had endometriosis, is it possible that I will have it too? This was the beginning of my endometriosis journey.

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I started my period when I was twelve years old, the summer before I started seventh grade. From the beginning, my period was terrible. It felt like there was a monster inside of me trying to literally claw its way out. From everything I had heard about periods before this, between my mom and media portrayals of the ordeal, I knew that periods were not really supposed to be a positive experience. So, despite what could sometimes be agonizing pain, I figured it was normal to feel this way.

Around eighth or ninth grade, my female classmates and friends began to open up about their periods. Once they told me about their experiences, I started to realize that something wasn’t right with mine.

While their periods lasted three or four days, mine always lasted at least seven, and more often, mine lasted nine or ten days. Most of them could go around eight to ten hours without changing their pad or tampon. I had to change mine every two to three hours or I would bleed through my pants. When I described my pain to them, I told them that it felt like hot knives going in and out of my abdomen that often left me immobilized for hours at a time.They stared back at me in shock.

Even still, I was convinced that I just had bad luck. I remember during my freshman year describing these conditions to my pediatrician and her responding by telling me that periods are just bad and moving on from the topic. A common response to my pain that my family had around this time was that, even if I was in pain, I was being too dramatic about it. I needed to just ignore it and stop letting it control me. The overwhelming consensus was that my period was awful, but that’s just how it is.

For the first two years of high school, these symptoms just got worse and worse. Then, one of my friends told me that going on birth control could help relieve period pain. Before this point I had already been considering birth control because I knew it could clear up your acne, and I had a pretty severe case of cystic acne. So, this came as an added bonus in my mind. I went to the OBGYN for the first time ever about a month before I started my junior year of high school. And this is how the interaction went:

Doctor: “Why are you here?”

Me: “I want to go on birth control.”

Doctor: “Why?”

Me: “I am sexually active, I want to get rid of my acne, and I want to relieve my period pain.”

Doctor: “Ok.”

And that was that. The doctor wrote me a prescription, and I left. Over the next several months, I slowly started to notice the effects of the pill, and then, almost overnight, my acne was gone and almost all of my period pain went away. It was a magical experience.

In the three and a half years after that, I switched OBGYNs and told several other doctors about my symptoms and how birth control fixed it, and still, no one paid any attention to the possible underlying condition causing this phenomenon.

Finally, after about six and a half years of experiencing debilitating period pain, I realized that I needed to take a more forceful stand in figuring out if I have endometriosis. Over this past Christmas break, after being off of my birth control for two months due to a pharmacy mishap, I got my period and experienced pain so bad that I needed someone to help me just to move me from one end of my bed to the other. I told my mom, and she suggested that I see a new OBGYN and ask them if I have endometriosis.

When I went to my new OBGYN in January of this year, I told her that I have a family history of endometriosis and I described the experience I had had with period pain and birth control. She then explained two vital concepts to me:

  1. There is no way to definitively diagnose endometriosis without surgery.

  2. Short of performing surgery to remove the excess tissue, the only treatment for endometriosis is hormonal intervention, or birth control.

She said that to diagnose endometriosis without surgery you put a patient experiencing period pains such as mine on birth control. If the pill effectively treats the pain, you can essentially deduce that the patient has endometriosis.

She said that the pain I have felt for all of these years is not normal, that it is in fact caused by my endometriosis. Finally, someone listened to my concerns, noticed my pain, and validated it. Putting a label on a condition may seem inconsequential to some, but it means the world to me. It proved to me that my suspicions about my pain were not unfounded, and it proved to me that several professionals had failed me in not noticing my condition. It is important that I learn to trust my body and myself and to find good doctors, and finally, I began to achieve this.

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There are still many questions I have that will remain unanswered for now. At the moment, my OBGYN does not think my endometriosis will affect my fertility the way it did for my mother, but this could completely change within the next several years. As of now, my OBGYN also believes that I will not need surgery to treat my endometriosis, but, in the future, it could worsen and cause me to need multiple surgeries.

I don’t want to have to take birth control pills every day for the next several decades to treat the endometriosis, but I do not want to experience debilitating pain. For now, I will go to the OBGYN once a year to reassess the progress of my endometriosis to see if further intervention is necessary.

The biggest takeaway I have from this years-long experience is that we as a culture need to start empowering women and girls to trust themselves. Furthermore, we need to teach people to listen when women and girls say that something is wrong. If I trusted myself sooner, I might have known I had this condition and been able to treat it sooner. Instead, I suffered through debilitating pain that I was convinced was normal, so I should stop being so upset about it.

If you have experienced or are currently battling symptoms similar to mine, do not be afraid to advocate for yourself. Demand that the people around you listen, because no one should have to suffer through this debilitating pain and this is not just all in your head.