Sarah’s symptoms began when she was 13 years old…but her diagnosis not until she was 34! Why not? How is that possible? It happens more than it should…curious? Read on, Dear Reader, read on.
Sarah’s Journey: I don’t think I’ve had a single day where my female reproductive organs were active and NOT pissing me off. I got my period one day in summer when I was thirteen years old. And it just … didn’t stop. For the first year of my menstruating life, I bled for 25 days out of thirty. It was ridiculous, and led to me having anemia and needing fluids almost all the time. My well meaning GP at the time said my body was just “adjusting”.
Flash forward to September when I’m fourteen. I go to school, I come home, I have a snack. I’d been in pain all day, but that was ALREADY THE NORM for me. But this was different. I threw up, and ended up throwing up every ten minutes or so that whole night. The GP thought it was the flu, but my mom took me to the hospital. At fourteen, I ended up having my first ultrasound and my first pelvic. It ended up I had eight cysts on my left ovary, one that was grapefruit sized and had gone gangrenous. I had that out and was put on the pill. I’ve been on hormonal BC ever since. And the blood stopped. But the pain … never really did.
Once a year, I’d snap and I wouldn’t be able to take it anymore and I’d go to the hospital. Most of the time I’d have a cyst that had ruptured to go along with my pain, but when I complained it was constant, year round, they said it was probably in my head. That went on for years. I remember fainting in an undergrad class from the pain, I remember flunking out of school because I was so exhausted and in so much pain I just couldn’t. I remember taking a whole bottle of Advil in a week (one of the 200 count ones!) because dear god, nothing helped the pain.
And then, one day when I was twenty-nine, I went in for my fourth ovarian cyst removal lap surgery. When I woke up, and was wheeled to my recovery room, I was told the cyst was gone, and I had endometriosis. Then I was given some pretty pictures and sent home. The doctor told me that it would make my cramps worse. That’s it.
I ended up having to do a lot of research on endo myself.
I’ve had my appendix out because I had to go to the ER for endo pain and was told that it was probably my appendix. (I figured hell, either way, it’s not like I need the appendix, may as well be safe. It wasn’t infected.)
I’ve been in the hospital for weeks while doctors did CT after CT thinking it was gallstones. Colonoscopies – it must be IBS. Benzodiazepines- it must be all in my head.
I had a doctor tell me to my face that there was no way it could hurt this bad, that I was being a hysterical woman and my mother would be ashamed.
In 2013, I was hospitalized twice. I was in the ER, writhing with pain, fainting with it, seven times. SEVEN. I also think I gave up hope then.
In a desperate bid to have a better life, I moved to Chicago with my BFF. I’m happier here, but no less ill.
I was hospitalized in June of 2013, and the doctor that saw me said that he was pretty sure it was endo. He referred me to a pelvic pain specialist. We’ll call him Dick. Dick prescribed me nerve drugs, muscle relaxants, and to lose weight. He said that yeah, it was probably endo, but all that stuff would help. I’m sure you can guess what happened. It didn’t help. I went to get a second opinion. She was smart enough to realize that nobody had gotten a 100% definitive diagnosis of me having endometriosis. So she did a diagnostic laparoscopy.
Lo and behold, after twenty years of doctors saying I “probably” had endometriosis, she confirmed what we had all figured was true. She found that it was creating adhesions within my abdomen. Most prominently, my uterus was fused to my colon. I don’t know how to express how scary that is. Maybe caps will help. MY UTERUS WAS FUSED TO MY COLON.
So much for the pill controlling things, right? I’m currently gynecologist shopping, as my most recent gyne said that there was nothing more that gynecology could do to help me. He said that yes, I probably need another surgery, but he doesn’t want to do one now because it’s only been two and a half years since my last one. Right now I see a pain management doctor every two weeks because I take Norco on a daily basis (I take two of the 10/325 pills every four hours in case you’re interested). My pain management doctor is the only thing that keeps me from laying in bed and weeping all day because of the pain.
While I’m very good at my profession, I’ve been unable to hold down a job for more than a year because of endometriosis. Few employers are willing to let people work from home in my line of work, and they certainly aren’t interested in employees who might need to take two or three weeks off at a time because of pain issues. Even with my pain management, I’d need at least two weeks off a month. Plus, on my “good days” I’m still on Norco, which still makes me lethargic, sleepy, and causes me to slur my words. Not exactly employee of the month material. I’m currently waiting on a decision regarding a disability claim I’ve filed. Fingers crossed!
Words of Advice for Us: Listen to your body, not the advice of others. I’ve had so many people in my life tell me that the pain isn’t “that bad” or that I “just have a low pain threshold” or that I was being “hysterical.” Even if any of those things were true, I would still have a right to compassionate care and pain management, and you do too. You aren’t lazy. You aren’t just “bad” at handling pain. Your body is doing things that are awful; I’ve heard doctors compare endometriosis to having internal blisters that are always being rubbed open. That’s hellish. You are strong. You deserve to be heard. If a doctor treats you as if you’re a whiny child, find another doctor. You deserve respect and compassion, full stop.
The Last Word: The network of people with endometriosis is wonderful and supportive, and I’m so glad that everyone is so kind. We have a horrible disease, it’s true, but I am glad for the friendships I’ve made because of support networks. It’s a bright side. And thank you to Bloomin’ Uterus for these profiles. It’s very kind and a great way for we to read other people’s stories. It makes one feel less alone when we find stories we have in common, and feeling alone on top of endo is the pits.
If you wish to contact Sarah, you can follow her blog.
Thank you, Sarah, for opening up and sharing her horrendous experience with us. But, am so very glad that you’re living near your BFF, have found a great support network of EndoSisters, and are taking steps to (hopefully) feeling better. Wishing you the best of luck with your disability claim.
And if YOU would like to share your story, please let me know. The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.