I tell my story in hopes that it will help someone else who is suffering, to let who ever you are know that you are not alone and you don’t have to fight alone. Warning, this is very honest, brutal and a bit graphic but the very real truth of my very hard journey.
The first time I knew something was really wrong was shortly before my 13th birthday. I was rushed to the ER doubled over in excruciating pain. The doctors assumed it was an appendicitis by the amount of pain I was in. Needless to say I was terrified, I had never experienced
pain like this in my entire life. An ultrasound was done and they found a cyst hanging from my right ovary and one single adhesion from my fallopian tube to my bowel. I hadn’t even had my first period and here I was about to have surgery. The entire process was terrifying!
My very first Gynecologist appointment was set because surgery had to happen, and here I am a terrified 12 year old before my first period sitting on the table clueless about what’s about to happen. In walks a very elderly man, he explains what’s going to happen and I absolutely refuse. The first time a man has his hands there I really don’t want it to be this creepy old guy and I felt so uncomfortable and burst into tears. I was treated as some horrible brat not the scared child I genuinely was, finally a female doctor was brought in and to this day I still believe there need to be other options for children other than stealing their innocence.
From here my periods never really normalized. I was 13 and couldn’t function for the first 3 days of my period, I was in insane blinding pain and enough blood it became alarming enough to put me on birth control.
I went through multiple types till I found one that balanced my hormones at least decently. The phrase “crazy bitch” was used more than once by my mother, we’re not going to pretend kindness was her strong suit. My “best friend” knew what I was going through and decided to announce to the entire male population of my middle school I was on birth control… let the slut shaming begin because I had something seriously wrong with my body.
We switched insurance so I had to switch Gynecologists and this one decided my dosage was just too high for someone my age so I was immediately switched to a low dose with a high chance still of ovulation and breakthrough bleeding (why exactly does this birth control exists if it’s highly likely that it won’t do anything it’s supposed to do?), yes this comes into play later. My periods become heavier and more painful than ever. Nothing I do can stop me from waking up in a pool of blood overnight. The terror is something I can never forget. I continued to be talked down about the severity of the issue and that I just have heavy and painful periods and it’s just normal, then the fainting spells started but it was still swept under the rug and I wasn’t taken back to the doctor despite my begging.
Another year passes and we change insurance once again, we end up at a giant HMO with an internal building and doctors on staff and an internal pharmacy and hospital. Everything gets transferred by my primary care over and I continue as “normal” until one day once again I wake up in blinding pain… once again and an appointment is made to see the gynecologist the next day. One ultra sound and a series of blood tests later we found the remnants of a burst cyst, they also found insanely low blood levels. My doctor started pulling my files and reading about my surgery. It turned out that my mother had level 4 Endometriosis that was so incredibly severe it caused the need to remove even her appendix and a section of her bowel when she had a hysterectomy. In looking at the ultrasound the doctor was able to see endometriosis growing and assumed that the growth found in the first surgery was caused by endometriosis. All the symptoms were there, the insanely heavy and painful periods, exhaustion, insanely long periods and a strong family history. I was switched onto a high dose birth control and instructed to take it continuously.
This treatment plan kept me from much pain most of my adult life but the more I read and the more I learned about it the more I realized what it meant for my ability to have kids. Many years later when they went back to check on the progression I was told I only had a couple of years left to have children. It hasn’t always been the easiest pill to swallow but overtime we have become a person beyond happy with my grumble of pugs. My amazing fiancé is always supportive, always amazing and loves me through it all. I am so lucky and no one should settle for anything less!
The last few weeks and the reason for my recent absence is a horrible pain flair up. Out of no where I’ve had more pain than I have had in over a decade. I almost literally fainted from the pain, sweats, things turning black and white and the while nine yards while in charge of an executive walk through with the owner out of town no pressure, I spent the entire drive home swearing to my best friend climbing the walls of my car. I was used to occasional cramping and pain after sex or random minor cramping but this level of pain is totally new. Every part of me is trying at only 33 to avoid a hysterectomy because there’s so manny other issues that come with that so we shall hope and pray that some serious pain killers keep the pain at bay,,, cross fingers this is a small bump in the road and not a serious complication.
Tell me your story Endo Warrior! You are epic and amazing and I can’t wait to hear it