Hello, lovely men and women of inestimable worth! My name is Erin, and I am what you might call a free spirit. I love a good adventure, whether it’s a real one or one in a story, and I’m always out to explore the world in exciting ways. I spend my time reading good books and pursuing various creative endeavours, but most especially diving into experiences of deep and authentic community and writing fiction. Currently I’m in the process of writing a fantasy book series, a story that I pray will bring my readers hope that the end of the story is not darkness, but rather light and redemption and glory!
My story of endometriosis is in many ways different from most other stories I hear. Since I grew up steering clear of conventional medicine, I never suffered a misdiagnosis, I never got dismissed by doctors, and I never underwent hundreds of tests that came to naught. And yet, it has still been quite a journey with immense challenges of its own. The pain has, for me, been the most harrowing aspect of this disease. I have had other life-impacting effects as well – fatigue so bad that it too often keeps me from being able to write the stories I dream of sharing with the world, mood swings so downhill that I get too depressed to even want to exist, abnormal bleeding that is sometimes as much as a light period, insomnia that messes with my ability to function well during the day, exhaustion with physical exertion to the point that I’ve almost passed out exercising before, and other odd symptoms that come and go and come again.
But above all these, the pain has been the greatest struggle for me.
I started experiencing pain when I was twelve, before officially getting my first period at fourteen. And ever since, most cycles I spend day one of each period vomiting, googling “how to make yourself pass out safely” (spoiler alert: there isn’t a way), sitting on the toilet with head hanging lower than the toilet bowl, and writhing around because it might at least help me not go insane. I had one period within the past year where the pain was so beyond what I believed humans were capable of bearing that the only way I can think to describe it is that for hours straight it felt like I was being cruelly and violently tortured.
It’s a completely draining, dehumanizing kind of pain that creates trauma memories, sitting in your mind to stir up anxiety and feelings of immense helplessness.
I think one of the hardest things about the pain (and all the other symptoms) besides the pain itself is the anxiety that comes from constantly having to work my life around it. Before taking progesterone (a recent development), I had irregular cycles, so there was always the wondering when my next period would be and if I was going to have to cancel my plans last minute to accommodate. Even though taking progesterone has made my recent cycles more regular, the host of associated symptoms still appears at a moment’s notice. It makes it very stressful planning things in advance, and often leads to disappointment on my end as well as frustration towards my inability to be predictable for others.
It’s an interesting thing, but though I grew up experiencing such debilitating pain, I just believed that somehow it was normal. l would always read online that “periods that impact you from living your daily life are not normal” and just dismiss myself, thinking that somehow the clawing, writhing pain I experienced was somehow not all that. And so, when I described all my symptoms to a doctor and she told me, “I think you have endometriosis. And PCOS,” I was shocked, because somehow it had never crossed my mind that those conditions might be a part of my story. But suddenly everything made sense. An ultrasound confirmed PCOS, and though only a laparoscopy can confirm endometriosis for sure, what else would be causing such debilitating pain, especially when accompanied by so many other telltale symptoms of the condition? My doctor referred me to some well-renowned surgeons trained in NaPro surgical techniques, and after months of being on waiting lists, I finally have a surgery scheduled with Dr. Puthoff in St. Louis, MO. Given his track record and many positive testimonials, I truly believe he will be able to help restore my body and my fertility to how it was created to flourish!
That’s what led me to where I am now. Being in the process of waiting for such a surgery is a journey and adventure like none I would have expected. The fears, the worries, the prayers, the daily surrendering it all to God, is quite a battle in every way. But the greatest struggle for me by far has been the financial one. I won’t get into all the particulars here, but
my financial situation is so complicated at the moment, and the wondering if I’ll even be able to pay for this surgery has been such a cross to bear.
The hospital itself offers financial assistance, but I am expected to pay $6,600 out of pocket for the surgeon fee and pre-op visit. And so, when I found MomminWithEndo, I couldn’t believe it was true. I can’t thank Mommin enough for the assistance with the financial aspect of this! Ever since Andrea reached out to me after my initial email, I have felt a lot more peace and have been able to put energy into preparing mentally/emotionally/spiritually for the surgery, instead of just financially. What an adventure this whole battle with endometriosis and PCOS has been! At the time of writing this, I still have more funds to raise, but thanks to the help of MomminWithEndo, I am already closer to paying for the care I need. I can’t wait to have a fresh start after my surgery, and to live the life of adventure and self-gift in all the full ways I have always dreamed of! And to all those who support MomminWithEndo’s beautiful mission (most especially you, Andrea, for starting up this nonprofit), I thank you so deeply. Your hearts are beautiful works of art, and it’s because of your gift of self that women like me are able to have a chance at a full and fertile life. My heart goes out to all of you!
Where the blue flowers grow,
Erin
MomminWithEndo 