People may say ‘knowledge is power’ and ‘there’s strength in numbers’. Well, no one knows this better than Alexandra: Endometriosis sur-thriver, patient advocate and community builder.
She’s the perfect balance between positivity and realness. Interested in hearing from her? Keep on reading as she shares her experience with endometriosis.
I started to take my endometriosis seriously and into my own hands of advocacy three years ago.
Three years ago I was 29 years old, I had just underwent a hysterectomy for adenomyosis and I thought all of my period worries were behind me. Oh, how wrong I was!
Three months post-op of my hysterectomy I started to experience these really strange symptoms for a few days each month:
- Severe shortness of breath.
- Lower right burning/bruised feeling ribs.
- Constant hiccups.
- Chronic heart burn.
- Chest pains, feeling like burning and ripping.
- A feeling of blood cascading down my right lung.
I realized after I tracked my symptoms that they worked in a cyclical pattern, which then started my search on asking the question can endometriosis effect your lungs?
I came upon an amazing resource during my search, which is the extra pelvic not rare Facebook page as well as their website. The amount of files, studies, research and information they had on all extra pelvic disease was beyond overwhelming, yet filled me with a sense of relief.
After bringing this concern to my primary doctor’s attention and being dismissed as if it was hormonally induced anxiety, I knew I needed to take the power and put it into my own hands.
I knew I had to educate and empower myself to become confident within my own health struggles to get to where I needed to go in order for someone to listen and help me.
See, my thoracic symptoms would progress in duration, frequency and severity each month that passed, to the point that so many months had passed that I was being effected every single day. From the moment I woke up in the morning until the moment I went to bed and even at that, sometimes within the middle of the night.
I started my Instagram account and blog in hopes to find other people who are in the same situation as myself.
Thoracic endometriosis isn’t overly common as there is still so much talk about endometriosis being a reproductive disease, when in fact it is a body-wide inflammatory disease.
I felt alone, I felt isolated, I felt like I was up against the world with this disease now within my thorax and I didn’t know anyone else around me who could relate. So I started an Instagram page to document my journey, and maybe someone else would reach out and tell me they’ve experienced the same thing!
Looking at what that Instagram account has turned into is more than I could have ever imagined and I am so thankful.
If it wasn’t for the online endometriosis community I wouldn’t be on the other side of this disease, I wouldn’t have the knowledge I needed in order to source out an endometriosis surgeon in order to receive the proper form of care.
I didn’t even know there was a doctor for endometriosis until the age of 29 and I’ve suffered with this disease for 15 years prior to that. It was actually because of social media that I found that out about what doctor I needed to see. Now being on the other side of excision surgery, receiving the gold standard of care for this disease, I finally can put in the time and effort to be a better advocate, a better mother, wife, friend and warrior.