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How Stage IV Endometriosis forced me to find my voice

My first period came in January 1998. I remember it like it was yesterday. I was in eighth grade and I remember saying the cruelest thing I have EVER said to my Mom. I cursed her for making me be born a girl. I still to this day feel awful for those words having left my mouth, as my Mom is the most amazing mother in the world. 

In high school and college, I would pass out from the debilitating pain and friends, roommates, and loved ones many times would find me in the fetal position just trying to breathe through the pain. What I learned from an early age from classmates, girlfriends, and women in my life is that we as women experience painful periods and it’s just part of being a woman. We (women) all experience this excruciating pain. 

I went on for the next 20 years thinking it was completely normal to feel stabbing pain for 2-4 days every 28 days. I learned quickly that heating pads and Ibuprofen were my best friend. I always felt that this pain was not normal, but nobody outside of my Mom truly understood and believed me. It was in college where I first learned about Endometriosis and thought, hey I think this is what this pain is all about. 

From 2007-2018, I saw nine doctors. Most of the doctors I saw, all said similar things, “We’re women, we’re used to dealing with pain. Every woman has painful periods.” Unfortunately, there were only two doctors who truly listened and believed me when I said I think I have Endometriosis. I felt defeated and crazy. I thought all these doctors are telling me this is normal that I feel like I am being stabbed in my uterus each month. I must be making this pain up. I was just surviving month-to-month and most definitely not thriving. As women we have an incredible gift of intuition, so trust that, trust that you know your body better than anyone else. Don’t be afraid to speak up!

My husband and I began our fertility journey 6 years ago. We tried naturally for 1½ years with no success. After 4 failed IUIs, 4 failed IVF transfers, and 3 miscarriages, I asked my doctor for more answers. She suggested two things: first was to do the Yoga for Fertility program with Beth Heller at Pulling Down the Moon. This was the first time I had been shown how to tune in and listen to my body in a supportive female community. I had never been so seen and loved within the fertility community. I have friends for life from that Yoga for Fertility program.

Second, my doctor suggested I see an Endometriosis specialist. I had excision surgery in November 2018. My surgery should have taken a max of 1-2 hours, instead I woke up 6 hours later to hearing news from my husband. My husband said “I have good and bad news, which would you like to hear first?” I said, “I want the good news first”. He said, “you were right, you have stage IV Endometriosis and bad news it was so extensive they removed your left fallopian tube.” Even though this news was the worst case scenario with Endometriosis, it was a blessing in disguise. 

Hearing I was right and in fact did have Endometriosis, was the best news I had received in 20 years. I had finally felt heard, seen, and my opinions were valued. This new information changed everything for me and my fertility doctors. My doctors could now move forward with adjusting my fertility medications and procedure process based on my Endometriosis diagnosis. 

I know many would be angry having a body that made you feel debilitating pain every 28 days. However, I am incredibly grateful for my Endometriosis journey because it has forced me to find my voice and learn how to advocate for myself and my body. I have also been able to share this information with my nutritionist who can better assist me. It takes practice and time in silence to tune in with our bodies and listen to what it needs and craves. Remember, you are the ONLY one who knows your body inside and out and no one else will advocate as fiercely for you or your body the way that YOU can.

About the author: Kasia has been a part of the PDTM community since March 2016. She has been trying to conceive for 6+ years, has had 5 failed IUIs, 7 failed IVF transfers, experienced 4 miscarriages, and has Stage IV Endometriosis. She is in the midst of her last and final IVF retrieval and transfer AND beginning her adoption and possible surrogacy journey. She is thriving as a Fertility Coach by empowering, supporting, and inspiring women on their fertility journeys. You can find her blog and contact information over at www.CoachingwithKasia.com

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Photograph by Anna Stidham

Kasia S. McGuire

Fertility Coach

www.CoachingwithKasia.com

Instagram: @KasiaSMcGuire

Mobile: (773) 844-2117

Email: CoachingwithKasia@gmail.com

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