We're officially kicking off our "Meet Your Endo-Sister" series with the owner and writer of the Understanding- Endo blog, Sara. This post provides a quick snapshot of Sara's endometriosis journey so we can continue to build awareness and help other women understand that symptoms and diagnosis time vary greatly from woman to woman.
"You should always lead by example, which is why I filled out my own form to share my endometriosis snapshot journey with you."
Endo-Sister Name: Sara T. - Blog Owner & Writer of Understanding Endo
Current Age: 30
Age You Were Diagnosed: 30
How long did it take you to get diagnosed with endometriosis? Under 1 year - I know, I am one of the rare and lucky ones!
Was your diagnosis confirmed? If yes, how? Yes, my Stage II endometriosis was confirmed via laparoscopy surgery and pathology report in January of 2019.
What are your endometriosis symptoms?
How did endometriosis first impact your life? Endometriosis first hit me with some panic attacks after feeling super sick at work. Naturally, I contributed this to my lunch simply not settling well, but when I didn't bounce back, I went to see my doctor on the third day. She suspected I developed an allergy given my work environment and was having a vasovagal syncope reaction then instructed I take time off work and recover, along with recommending I find a new job.
A few days later, my symptoms progressed. I started to have unbearable pain in my lower abdomen, I struggled to eat because I would hurt so bad after eating anything, my BM's completely changed, I felt nauseous all the time and had terrible headaches and lower back pain that prevented me from sleeping well. I really thought I was struggling with an intestinal bowel disease, or a parasite, or something along those lines, but never once suspected endometriosis.
How is endometriosis impacting your life daily? I often wake up in the morning needing to use the bathroom and feel distinct pelvic pain afterward, along with feeling incredibly nauseous (which will often prevent me from trying to eat anything before the afternoon hours). I still get pain in my lower head/neck area and lower abdominal pain daily, and I also get a weird pain behind my left knee, along with consistent lower back pain. There are times I will feel extreme fatigue to the point I struggle to stay awake or limits my movement/activity.
How did you come to terms with having endometriosis? I'm still trying to come to terms with having endometriosis, it's hard when your life drastically changes from chronic health problems. Some of the things I do to help cope include starting this blog, seeing a therapist, practicing mediation/mindfulness/journaling daily, reading helpful books, and doing yoga twice a week.
If someone reached out to you who was recently diagnosed with endometriosis, what would you want to tell them? I would want to tell them that I'm here for them, on good or bad days, and that this is a new chapter in their book of life. I would tell them to join Nancy's Nook, a Facebook Group with legit endometriosis self-learning resources from symptoms to treatment options - shout out to Nancy Peterson for being such an advocate of endometriosis and putting that group together!
And most importantly, what works for one woman with endometriosis relief may not work for you and that's okay, a big part of living with this disease is trying to make life modifications that work for you through trial and error. I know, it's not something we want to hear when we're raised to believe that doctors can fix anything with a magic pill.
Endometriosis does not have a cure, do you think that's bullshit given how many women have this disease? Yes! We need to find a cure.
Is there anything we missed that you want to share regarding your endometriosis journey? Going undiagnosed with endometriosis will literally drive you crazy and you may develop anxiety, depression, or both. I know how hard it is to fight with your healthcare team, insisting something is wrong because it is, yet the tests keep coming back normal or negative. Do not ever give up - you know your body better than any doctor or test, keep fighting for your answers, even if that means switching doctors and seeing specialists.
Our Mission: Spread Endometriosis Awareness
Our goal at Understanding Endo is simple: We want to help you learn more about endometriosis.
Do you want to be heard?