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?
My symptoms started during high school. Ever since getting my first period at 12, I have had “bad periods.” I didn’t realize how bad they were until I would compare them with my friends. I then realized, that it was not normal. I was undiagnosed all throughout high school, but still struggled with extremely painful periods. I went to many gynecologists that told me I have bad periods and to start birth control. I tried that throughout high school and at the end of high school. My symptoms started progressing as I was continuing to get older. I went to an endometriosis specialist in 2019 (age 20) and had my first excision surgery and was diagnosed with endometriosis.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
My first symptoms were just around my period. Symptoms like cramping, heavy bleeding, passing clots. As the years went on, my symptoms got much worse. I was having extremely painful cramping throughout the entire cycle, not just on my period. During my period I was passing large clots, extreme pain that radiates down my legs, unable to get out of bed due to cramping. I was also having frequent ovarian cysts that would rupture or grow. I have had 4 excision surgeries. It wasn’t until my 4th one that I have felt a slight change in pain. My endometriosis grows very quickly, at one point I was having surgery every 2 ish years. Although, surgery has helped with some of the pain, I still struggle with constant symptoms. My current symptoms are chronic pelvic pain, chronic nausea that gets worse with my period, ovarian cysts, no appetite, joint pain, bowel symptoms, bloating (Endo belly) and ovulation pain.
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?
At first, I was just told that I had bad periods and it would get better if I started birth control or a hormonal therapy. I was also told that it was just IBS. It wasn’t until I went to an endometriosis specialist that I felt like I was taken seriously and was not dismissed. I now only see endometriosis specialists and it is a huge difference. I have seen 3 specialists that are extremely caring, considerate, very knowledgeable of endometriosis, and look at endometriosis as a whole body disease rather than just one piece.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
Currently, endometriosis has affected my overal wellbeing. I am a special education teacher and I have had to be on medical leave most of this school year because of my Endo. It debilitates me. It is very unpredictable and it is hard to plan anything due to the possibility of not being able to do something/go somewhere. I am in bed most of the days, on the bad days it is debilitating and on the okay days I try to be very present in feeling okay enough to do mundane things. As I explained before, endometriosis being a whole body disease, I have a lot of symptoms that doctors are still currently trying to treat/understand better. Really trying to figure out how much is endometriosis affecting other symptoms I have and/or making them worse.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
I am extremely lucky to have an amazing support system of family and friends. I am very privileged to have such great supporters in my life that are walking beside me on the hardest days.
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 currently being treated at the Mayo Clinic. The quality of medical care there is unlike others. The providers that I am seeing are amazing. Extremely thoughtful, caring, understanding, and very empathetic to my situation.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Yes, I am on medical leave right now as I am unable to work. Also, I used to teach dance and I am unable to do that as well which was one of my favorite hobbies. last year I had to have a PICC line for about 6 months for my medications to the nausea I have, so that had its own obstacles and challenges.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
I feel like I have tried a lot. Excision surgery helped my pain in some ways. But, a lot of essential oils, CBD creams, heating pads, medication, and rest are all I can do when I am having a rough day. Pelvic floor physical therapy has helped a lot with bladder/bowel symptoms as well as learning how to fully relax the pelvic floor when I am having pain. Such as practicing different self massages and breathing techniques. For my nausea, I have many medications and some other remedies such as ginger chews and essential oils. I am currently trying a low dose of progesterone to see if that will relieve some of my symptoms and reduce having a period.
What do you wish you knew earlier in your journey?
That it is going to be ups and downs. That there will be highs and lows. Good days and bad days. And that allowing myself to rest from other things is okay. It is okay to take a break when your body needs it.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
I love the Endo community! As soon as I suspected I had endometriosis I joined a Facebook group, which was 5 years ago. It has been extremely helpful for tips, ideas, surgery preparation, and so much more. No one close to me has endometriosis so to have the community means everything. To know that I am not alone in what I am feeling helps me to feel so supported through others lived experiences in a different way.
Are there any misconceptions about endometriosis that you've encountered?
That endometriosis is just a pelvic disease, symptoms are just “bad periods”
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?
To find a doctor that truly listens to you. After 4 surgeries and many many doctors, I have found 3 specialists that are amazing. Don’t give up on finding a really good specialist that is very knowledgable about endometriosis, cares for you as a patient, empathizes with your experiences, and advocated for you. You also have to be your own advocate and voice when you are able to. You are not alone and you are an Endo warrior.
