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For almost a decade I have struggled with insurmountable fatigue, nausea, anxiety, and pain so intense it would cause me to lose consciousness at times. For years I couldn’t figure out what was causing all of this. Multiple doctors, blood tests, and scans all which came back normal. Doctors told me it was my diet or that I was simply dehydrated, not getting enough sleep. My symptoms got so intense and constant it impacted my daily life, I began missing things like work, school, and social events. I felt lost, I didn’t know what to do, according to the tests I was completely healthy. This only increased my anxiety. I began fighting for myself and fighting for answers. On October 5th, 2023 I underwent surgery for endometriosis and I finally got answers. I had all of the endometriosis removed. I was diagnosed with stage 4 endometriosis and adenomyosis. I had over 40 lesions, multiple adhesions, and 2 hernias. The endometriosis was growing on my bladder, my colon, my surrounding nerves and many other places in my pelvis/abdomen. The first words out of my mouth after surgery were “did they find it”. I cried when I learned they had indeed found it. I was so relieved to even have a diagnosis and have answers. The feeling of validation was incredible. I’m almost 3 months post op and have already seen a TREMENDOUS positive change in my life. I can live my life fully now. So many women struggle with this disease and so many women are dismissed or called dramatic when in reality they are suffering. I will forever be bringing awareness to this disease. I know God has a plan for me and I’m so thankful that He provided me with the answers I prayed for. I’m thankful for my journey and diagnosis. I can now help other women who are struggling and be an advocate for this disease. Unfortunately there is no cure, the endometriosis can come back even after surgery, but I’m still grateful to have answers and now spread awareness!🎗️
A HUGE thank you to both my amazing doctor, Dr. Andres and my surgeon Dr. Fox who not only helped me find answers but also for believing me💛
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?
8 years, 15 years old, 22 age of diagnosis
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Extremely painful periods, chronic pelvic pain, bloating, nausea, fatigue, anxiety. Yes my symptoms have improved after surgery. Since surgery, my symptoms are mild, some bloating and nausea but minimal pain as I also had a presacral neurectomy.
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?
I was dismissed by many and told it was just IBS, a bad diet, dehydration etc.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
As my symptoms progressed I began missing school, work and social events. It began taking over my life. There were days I didn’t get out of bed and slept 8 hours a day
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How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
Before surgery I felt alone like no one believed me. Since receiving my diagnosis, my family and friends has been so supportive.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
My medical care now is amazing, I love my GYN and my endo doctor.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
I almost lost my job due to endo, I fell behind in school work and a lot of my friendships faded because I could never do anything and was rarely social.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Hormonal treatment, removing gluten, and excision surgery.
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?
Supplements
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What do you wish you knew earlier in your journey?
I wish I had a better understanding of endometriosis before. I had no idea it affects the whole body etc. I wish I knew earlier that my pain was not normal and wasn’t just something I had to deal with.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Yes I love the endo community. It’s a reminder that I’m not alone. I’ve learned so much about this disease and so many helpful tips through support groups etc.
Are there any misconceptions about endometriosis that you've encountered?
That endometriosis is just a bad period, that after surgery we’re “cured”, changing our diet and hydrating more will cure it, birth control is the only answer
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?
You are not crazy and not alone! No one knows your body better than you! Listen to your body, fight for yourself!