Hysterectomy at 22

I had gotten my period at a young age. It had always been painful, even when I wasn’t on my cycle, I would have shooting pains and cramping that lasted weeks. This led me to my first exploratory laparoscopy at 17 years old. I was told everything looked normal, put on birth control & recommended to see a psychologist (insinuating my pain wasn’t possible since I was “healthy” and “normal”).

I refused to take that for an answer and six months later I went to see a different OBGYN with more experience and knowledge. He diagnosed me with Stage IV endometriosis, it was on my rectum, ovaries, intestines and bladder. He diagnosed me with adenomyosis, rotated pelvis, enlarged/tipped uterus, interstitial cystitis and Polycystic Ovarian Syndrome (PCOS). I broke down into tears for the simple fact that my pain was validated. He removed what he could, started me on progesterone and a new birth control. This was just the beginning of my journey. 

I felt great for about four years, until I didn’t. My pain was worse than ever, I had gained weight, my mental health was suffering and I was throwing up multiple times every day due to the pain. I had another excision surgery of my endo in 2021. After surgery I had relief for about three months. I was desperate to feel like a normal 21 year old and I was willing to do anything. 

We decided a hysterectomy was the best option for me at the time and so that’s what I did (note: hysterectomy is not a cure for endometriosis as these lesions can be found outside of the uterus). After the hysterectomy I met with my doctor to debrief about surgery. Almost all the endo she had removed three months prior had grown back. I was told the amount of scar tissue I had formed would be a hinderance to any future operations. It’s been over a year since my surgery and I am in the exact same pain as before. My mental health is at an all-time low and it’s hard to keep living like this. Due to insurance issues, I am stuck with an OBGYN that quite literally “doesn’t know what else to do for me”. 

My journey is far from over, I have never felt so alone going through something, but I don’t want other young women to feel that way. There are doctors out there who truly care and want to help you. You just have to be your own advocate and unfortunately it might involve meeting different specialists until you find the right one for you. In 2024 I will be going to a new hospital and new doctor. I plan on creating videos documenting my journey for others. Endometriosis has ruined my life, but that doesn’t mean my life is ruined forever. I have hope there are other options and I hope to share that with others. We are not alone!
 

“There are doctors out there who truly care….”