I’ve been trying to put my words for how my past has shaped my future. We all have our stories to share. Why do I feel the need to share my story of Endometriosis? My hope is that I can help others who may not advocate or speak up enough for themselves.
What brought on my urge to share this story? I read an article recently about Marilyn Monroe’s journey of endometriosis. This article began to anger me, and identified the lack of resources for a disease that so many woman have. There was a question in this article that discussed her reason for drug use could have been a way to deal with the daily pain in her life that is Endo…
I began my endometriosis journey at the age of 12 years old. Most women don’t see a gynecologist until the age of 21 or if they are sexually active prior for at least 2 years. My mother believed my pain and so to the doctor we went. I was lucky I had my mom to advocate for my pain.
For two years I had to find the right doctor. My first gynecologist prescribed me birth control. A quick fix, or so I thought. When that didn’t help she told me that I was too complex to keep seeing her and she referred me to a specialist.
In 2002, I had my first surgery (laparoscopy) that found stage 2 endometriosis and found my appendix to be enlarged (this can happen as endometriosis can push on other organs and agitate them) For a few years I was great.
The pain came back and in 2010 I began getting ultrasounds due to unknown fluid in my abdomen. After one scan, I was called to come back to the office to speak with the doctor. She informed me that I could possibly have cancer. A few days later she confirmed it was not cancer via blood work.
In 2011 I had my second Laparacopy. This time I was stage 3. I was told initially I would be better in 4-5 days. After 7 days of pain, I called the doctor and had a consultation. The doctor put her finger tips together and made a circle out of her hands, stating that was the size of the cyst they had removed. She was unsure if I could get pregnant and if I ever wanted to I would need another surgery to open up my tubes, as one had fused together from the pressure of the cyst. After researching, I believe I had a “chocolate cyst”. I read an article 2-3 weeks ago about how this killed a young girl because the doctors didn’t believe her pain. It’s very possible if this hasn’t been removed it would have been fatal.
I believe I had another surgery in 2014 from another doctor but the surgical note in my chart is unclear. I do remember a male doctor telling me that after a surgery I was fine and the pain was normal and some woman tolerate pain better. However, this appointment was a blur to me and I only remember him minimizing my pain and making me feel like I was crazy. This is a theme of pain amongst women with their periods. It’s assumed we’re just sensitive and not real.
In 2016 I had the surgery the doctor had recommended to open my tube. More stage 3 endometriosis was found but my body did heal itself with my tube and it was already opened! I was pregnant with Liam 2 months later!
In 2018 No intervention was needed and I got pregnant with Lucy! My miracles were here and I was beyond grateful.
Fast forward to 2021. My endometriosis pain came back with a vengeance. My doctor dismissed me stating only one plan of action for my pain and walking out of the room leaving me with so many unanswered questions. She was wonderful for my babies, but once I had them I felt like I wasn’t looked as a person by her anymore.
I began looking more into endometriosis and found Nancy’s Nook on Facebook. This group changed my entire view of what I had been going through. The education that Nancy provides and the research shown has helped me further navigate this process.
What I found out? A gynecological specialist is not necessarily an endometriosis expert. I had laparoscopies, but all of which is where they go in and burn the endometriosis they see. This is not the recommendations of an endometriosis expert. Excision is the only surgery that gives hope endometriosis goes away and stays away by getting the endometriosis out at the root.
There are very few doctors in the world that are trained in this. We’re lucky to have Dr Cara King right her at Cleveland Clinic! I am excited to announce that if everything goes well I feel hopeful that my pain will be gone with a partial hysterectomy on February 15! She found out that my bladder is fused to my left Ovary. This is due to the burning technique that causes excessive scar tissue, unlike the excision procedure.
For the first time I am hopeful and grateful. My mother although not here, taught me how to advocate and never give up on finding answers. I owe my persistence and perseverance to her. I believe my mother had this awful disease as well based on her symptoms, but could not advocate for herself like she could for me…
Keep advocating, believing, and finding the right care! We got this!