A year after my periods started, I was in unbearable pain with heavy bleeding. During band practice that lasted two hours, I would bleed through an extra tampon, pad, my underwear, and shorts. It was embarrassing and uncomfortable. From there, I told my gyno at 14 I needed birth control. She told me the pill would solve all my issues. I took it without the placebo week from 14-19. I felt irritable, moody, and anxious. At this time, I also experienced suicidal ideations. I thought these side effects were contributed to the fact I was a teenager. At 19, I started nursing school. We learned about different types of contraceptives, and I knew I had to discontinue the pill. I switched over to the Kyleena IUD. I felt more alive and like myself; however, my pain intensified. I had pain throughout the month, especially during ovulation and my literal phase. In March of 2023, I found myself at the ER due to pain that was commonly associated with appendicitis. After administration of an NSAID and two narcotics, my pain failed to subside. Tests showed it was most likely an ovarian cyst that ruptured. Both the ER attending and resident physician started their lack experience with women's reproductive health and suggested I follow up with my gyno. I did. At the appointment, the gyno performed an external and internal exam. I cried the entire time due to pain. The doctor told a story about how a construction worker thought he lost his foot due to an implanted nail… at the ER, they removed his shoe and the nail was only through the sole of the boot. His pain was all in his head. He inferred that my extreme pain was as well. He told me to mix the IUD and the pill together to find relief. I told him I'm only comfortable with the IUD. I sought out a second and third opinion; they told me the same. I gave up and tried the pill. The first week, I had three panic attacks. I haven't had panic attacks in years. The second week, the suicidal ideations came back. I knew I had to get off the pill. I told my boyfriend of four years everything and supported me to get off the medication. At the next appointment with gyno #1, he listened to my mood complaints. He screened me for anxiety, depression, and bipolar disorder. As someone whose close family has these conditions, it was heartbreaking to hear because my symptoms fail to align with theirs. It took my boyfriend saying at the appointment I'm not the same person I was a month ago to convince him the pill isn't right for me. As of today, I am not on any birth control. It's been two weeks, and I don't know how to feel. I've been on birth control from 14-21. I'm excited for new steps as I found an amazing PT and advocating for a specialist in endometriosis.
How long did it take for you to receive a diagnosis? How old were you when symptoms started? How old were you when you received a diagnosis?
Symptoms started at 14. Diagnosed through laparoscopy at 21.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
At the beginning, it was heavy bleeding, numbness in my thighs, and excruciating cramps during my period. Now it’s unpredictable pain throughout my cycle with leg numbness, cramping, shooting pain, tearing pain, pain in my lower ribs, back pain, back spasms, the list truly continues.
What was your experience with healthcare professionals during the diagnosis process? Were there misdiagnoses or misunderstandings? Did you experience any dismissive attitudes regarding your symptoms?
The only reason I received a laparoscopy was because the gyno thought I had a dilated fallopian tube and it risked my chances of fertility. Instead, I had three ovarian cysts, three paratubal cysts, and two lesions of endometriosis that they found. They all dismissed my pain and told me to get on the pill after refusing for so long.
How do your symptoms/pain affect your overall well-being? Have you experienced any challenges in communicating your struggles to others?
I'm an ICU nurse. It’s hard when I can't stand or have to take a break. Staff doesn’t understand. I can't explain to the patients. They also say "I'm too young to experience such pain."
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
Lovely! My parents are extremely supportive, and so is my boyfriend. Each is so willing to learn and grow with me. At Disney, my boyfriend and my dad blocked people from hitting my cane when my pain got so bad.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
I am still searching. As a nurse, it’s difficult to let go but also trust your healthcare team treating you. I feel providers fail to explain my condition because I have a healthcare background. However, I've had to learn everything on my own because nursing school fails to acknowledge endometriosis.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
My relationship, my active life (weightlifting).
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Heating pad, yoga, weight lifting, ibuprofen, somedays cream, tens machine, and most importantly my PT.
What strategies or treatments have NOT been effective in managing your pain? Are there specific activities or lifestyle changes that you've made that didn't help to alleviate symptoms?
Cardio! It hurts so bad but it helps so much. Pilates because of how intense it is on the core.
What do you wish you knew earlier in your journey?
That my pain is valid and yes your symptoms aren’t normal.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Yes! I learned so much through this page and so many others. I can’t express my gratitude towards others who have shared their stories.
Are there any misconceptions about endometriosis that you've encountered?
Pregnancy, hysterectomy, and the pill cure all.
What advice would you give to someone who suspects they may have endometriosis? Is there any guidance you would offer to those recently diagnosed or struggling with their journey?
Advocate for yourself! And be sure to do your own research. Don’t fully trust what providers tell you; make sure you have the knowledge to understand what they’re explaining.
