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My endo journey began when I was 35 in 2016. It was my first day of graduate school and I was getting up and ready for school. I had the worst pain after a BM and couldn’t stand. I rushed to the ER with lower abdominal pain. After a CT scan, an ovarian cyst was revealed. I am very proud that I was given medication and still made my afternoon class. As the pain continued for months I fought to delay surgery but finally couldn’t stand it anymore in November 2016. What was thought to be an uneventful cystectomy revealed stage 4 endo. As I awoke from surgery my doctor said “ you will be a great IVF candidate”. I had no idea what she meant. As I researched and learned about my condition, I was sad, angry, depressed and contemplated my future fertility. In January 2017 I decided to freeze my eggs. Just to give my future self the best chance I ever could have at a family. I was single and alone, with 44 shots in my belly for 2 weeks. This resulted in 6 eggs frozen. In 2017, I met my current partner and he has been nothing short of amazing in this journey. He’s hugged me while I cried in pain from cramps, listened to me describe the clotty, brown color of my menstrual blood that came from my bad ovary. For years this happened every month. In 2018, another cyst developed. I decided to wait for surgery because my local gyn told me over and over “if I go in there again, everything is coming out”. That phrase scars me to this day. Finally in 2023, with the cyst measuring 8 cm and extreme pain, I sought out an endo specialist in Dallas for excision surgery. My doctor is amazing! It was a difficult surgery but I am so much better. She told me there was no reason why I would need to remove my organs. I am so thankful that I had the opportunity to have this surgery as I know many women can’t. I am still on my fertility journey and hope to use my eggs soon to start a family.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
I currently have mild to moderate pain during the first day of my cycle.
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?
My local doctors just wanted to remove everything and be done with me. I felt like they wanted to do what was easier for them and not what I really wanted.
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Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
When I was in pain every day, I couldn’t even get myself away from the heating pad. The minute my eyes were open there was pain non stop. I missed so much work and family events because I just couldn’t function.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Now MyObi belt really helps and lavender oil.
Are there any misconceptions about endometriosis that you've encountered?
That a hysterectomy is a cure and it’s not!
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?
Do your research! Find a specialist! Regular obgyns are not trained to handle severe endo.