‘What I want you to know about endometriosis’: Iva’s story

Growing up, I heard stories about how everyone’s first period is usually no big deal. The cramps, the fatigue, the cravings—just uncomfortable to most.

But my first period at age 11 brought excruciating pain that caused me to double over and wonder if I was the only one who experienced this. I had “the talk” with my parents, but I really didn’t know much about menstruation, so I felt confused and scared every month.

My school nurse and other adults seemed to think I was exaggerating my symptoms to get out of class. The emotional pain mixed with the physical, making my formative years incredibly challenging. I didn’t know it at the time, but I had a condition called endometriosis.

Today, I’m 27 and have been followed by Boston Children’s Division of Gynecology since I was 15. Thanks in part to the support I’ve received from Boston Children’s, I’m now completing my master’s degree in social work so that I can one day help advocate for young endometriosis patients. I want to give them hope and show them that they can still achieve their goals with the help of a compassionate care team.

Here are some things I want other kids and parents to know about endometriosis:

Endometriosis is not an “adult” condition

After seeing other doctors with no luck, my parents and I decided to make an appointment at Boston Children’s.

Surgery can help manage symptoms  

Even though I had tentative diagnosis after my first visit with Dr. Laufer, I needed laparoscopic surgery to confirm it. This surgery is minimally invasive and allows your doctor to check for visible and physical signs of endometriosis.

Still, hearing this as a teenager really scared me—I was overwhelmed to say the least. But I knew that it would give me answers and help my care team develop a more effective treatment plan.

To ease my concerns, Dr. Laufer and the entire care team were incredibly supportive and transparent about the entire process. Dr. Laufer was very clear, however: Surgery is not a cure for endometriosis. But he explained that it can help slow the progression of the condition.

I have also been able to treat my endometriosis and balance my hormones with birth control medication and other hormonal therapies. This has worked best for me, but treatment can be different for other people.

Therapy can help—a lot

Dr. Laufer took a very holistic approach to treating my endometriosis. In addition to taking medication and undergoing surgery, I worked with other specialists to help me manage symptoms of endometriosis. For example, gastroenterologist Dr. Laurie Fishman worked with me to address the GI problems that can accompany this condition.

I also found therapy very helpful. I struggled a lot with my mental health when I was a tween and teen. Not being believed when it came to my pain led me to feel silent and frustrated. With the help of a therapist, I gained the tools to work through those emotions and develop coping skills to help manage pain. I believe strongly that therapy can benefit people living with endometriosis.

Family support matters

Looking back, I understand that my parents did the best they could with the information they had before learning about endometriosis. However, it was challenging trying to advocate for myself when the adults around me didn’t understand the severity of my pain.

The biggest piece of advice I have for parents is to believe your child. Have open conversations about periods and encourage your child to speak up if they are in pain.

For any tween or teen who is struggling right now with endometriosis, know that what you are feeling is valid and real, and never stop advocating for yourself. There are people who will believe you and you will get the treatment you need.

Learn more about the Division of Gynecology.