03/11/2021
Hello! I hope you are all well. I want to use this post to address my supporters to explain my inactivity over the last few months. I still have big hopes and dreams for the success of Saol Nua, and considering that it is endometriosis awareness month I thought it would be a good time to explain my absence. This is a long post but I would appreciate anyone with the time to read it through.
My love for birthwork stems from my lifelong dream of being a mother. Even from early childhood I felt strongly that it was my life’s purpose. Every time there was a baby around I flocked toward them to play or snuggle and nothing about that has changed. I even used to say not being able to have kids was my greatest fear. My 3rd grade classmates obviously thought I was strange since their fears were things like snakes or ghosts. But I was different.
I was like any other 12 year old that started mensuration. It hurt a little, I was scared to death that I’d bleed through my jeans, but I was a ~woman~ now. I even got a training bra that I definitely didn’t need. I bled irregularly, but my body was just adjusting. That’s normal, right?
When I was 13 my cramps started getting a little more sore, and would start days before my period. It would last nearly 2 weeks. But hey, that’s normal, right?
When I was 14 I had to miss a couple days here and there cause of those killer first few days. My period was always 2 weeks long, I needed to double up on super tampons and overnight pads cause I always bled through. I was on a constant rotation of midol and ibuprofen. But being a woman is hard and that’s all normal, right?
When I was 15 I had gotten the hang of sleeping with a towel under me, packing extra pants for school, and catching up on schoolwork for those 3 or 4 missed days a month. I’d gotten used to sneaking my midol into school cause the nurse wouldn’t give it to me as frequently as I needed it. “Mom, this really can’t be normal, right?”
We got an appointment with a pediatric gynecologist at children’s hospital in DC.
Well… this is all normal. Fainting and vomiting over pains every month, bleeding for 2 or 3 weeks at a time, not being able to get out of bed. Normal. Take some birth control, it’ll help.
Psssst! It didn’t help!
Sure, for some people it might. But for me it pushed me into a deep depression and very anxious state. More anxious than I already was! It took me months to adjust and over the course of being 16 I must have tried at least 4 variations of hormonal birth control pills. And I got an RX for Xanax out of the deal, too. I was now dealing with everything I was dealing with before, plus the mental health aspect, plus newly developed GI issues AND the regular struggles of being a 16 year old girl.
At 17, I ditched the birth control so I could go back to my normal level of anxiety. It was much more manageable. My symptoms persisted, though I tried to suppress them as much as possible.
Around 19 the newfound hip and back pain increased. My whole lower half was so sore, constantly. Attending births was so sore because of the standing, walking, hospital seating… Whether I was on my period or not cramps would be almost constant, the bleeding would last at least 3 or 3 and a half weeks with only a week or so in between. I often looked 5 to 6 months pregnant because of bloating. At this point I started to do some research on my own.
I got X-Rays for my shoulder and back pain and got meds for “frozen shoulder, lower back pain and possible arthritis in the hip.” They didn’t help.
At a particularly stressful part of my 20th year (covid, loss of a job, family stress) I lost it. I couldn’t deal with this s**t for another second. I had been bleeding for almost 8 weeks. Painfully. Heavily. Nonstop. I made, yet another, doctors appointment at a women’s clinic.
When I got there I soon realized it was more of an STD testing site and abortion clinic. I had little confidence they’d be of much help, but within 15 minutes of talking to my lovely doctor she had me getting hormone and blood tests, exams, everything. Truly an angel. She told me she was 99% sure I had endometriosis (an accurate diagnosis can only come from diagnostic laparoscopy) but between my symptoms and exam she was confident and wanted to begin treating my symptoms.
Now I finally have a diagnosis, but what do I do about it?
Well, they started me on depot provera, a 3 month shot originally intended for birth control but later revealed to be a good regulator for people with endometriosis. I instantly gained weight, lost hair, developed new acne, the bloating became worse, I became more mentally unstable (again) and had increased joint and back pain. I only lasted 9 months on that one…
I finally found a doctor willing and able to do surgery. (My first doctor didn’t do surgeries.) After all my research I knew ablation (burning out endometrial lesions) was not gold standard. I knew it wasn’t caused by retrograde mensuration (when period blood flows into your abdominal cavity.) I knew it wasn’t going to be fixed after 1 surgery and will be something I continue to deal with for the rest of my life. I also knew I was tired of turning down plans, having scars on my back and belly from my heating pad, all of it… so, despite my sweet, kind, caring doctors misconceptions of the disease I decided to go through with it.
How scary is that? Letting someone you know is wrong cut you open? 🤦🏻♀️
January 7th, 2021 I finally FINALLY made a step toward a fulfilling life. I had endo on my bowels, in pockets of my abdomen. My left o***y had been fused and ripped from my abdominal wall more times than she could count. (So, that’s what that tearing feeling was!) There was evidence of many ruptured cysts.
The healing was rough. Rougher than I expected. But here I am 9 weeks later and I can bend to tie my shoes. I can sleep through the night. I can stand more than 20 minutes. I can actually exercise!
I can live my life without crying every single day from pain. And that’s normal, right?!
Endometriosis effects 1 in 10 women. Why don’t more people know about it? Why don’t more doctors know about it? Why didn’t that pediatric gynecologist wonder if I had it almost 7 years ago? And I’m one of the lucky ones. I caught it early enough that I still might be able to carry my own children. I wept some nights in fear of infertility. It’s going to be hard for me to get pregnant. But I have a chance and that means everything to me.
That’s why I’ve taken a break from Saol Nua. Not because I’ve lost my passion for it, but because of envy and fear. And that’s ugly. And I’m working through it. I just wanted to take the time to share my experience (so far) with Endometriosis to not only explain my absence but also in hopes that someone may understand this issue more or be inspired to advocate for your diagnosis. Thank you so much for taking the time to read my story. I am 1 in 10.
