Endometriosis at 17

My name is Cassie. I was diagnosed with stage 4 endometriosis at 17. I am now 22 it’s hasn’t gotten easier. My depression is off the charts I don’t know how to cope with it all the time. Some days are better than others. I felt inclined to tell this story. I feel like whoever is listening and reading believes me. Doctors never believe. It’s always “are you sure it's state 4? That’s advanced for your age and like I don’t know that. (Like I wanna lie about this).

When it all started

To start from the beginning, I was 16 sitting on the floor of my bathroom. I thought I needed to throw up. I couldn’t move. I had my head in the toilet. That led to an emergency visit that night. We sat for hours in the room. I got an ultrasound and they told me I have an ovarian cyst on each ovary and recommended I go and see a gynecologist. I didn’t even want to go. I felt like everyone would think I’m pregnant.

Getting an ultrasound

When I got the gynecologist, I got my first internal ultrasound. Then she put me on the blue pills to try and stop the growth or slow it down. That didn’t work. I then was taking the Lupron shot and that put me in a small stage of menopause. Let me tell you, the hot flashes are no joke. I was sitting in school in dead winter sweating like I ran a marathon. After that didn't work, I got my laparoscopic surgery and was bedridden for about 3 weeks.

Starting to feel better when it immediately got worse

After that things were kinda normal for a while I had felt better than I had for two years. Well fast forward to me being 20. It got bad again the pain was more frequent. I was having a flare up every month. I had been to the hospital again and it was a struggle to convince people I needed help. They always check for appendicitis. I know it’s protocol for the pain I was in. I just wanted help, I actually had a doctor come in and tell me “you were right about endometriosis.“ It felt good like I was heard and the doctor told me I was right.

Having endo without health insurance

During all this time I had no health insurance, I didn’t know how to get any I couldn’t afford to have an ultrasound. I have been to at least 20 hospitals in 5 years. I knew they would have to help me with insurance or not. I got the hospital bill to show for it. I have some pain medicine I take in time of need only if I can’t take it anymore. I try and save it for desperate times I hate the idea of taking pain pills. However, that’s what has gotten me by. This year has been the worst of them all.

Hospitals, insurance and unbelieving doctors

My boyfriend is amazing with all this. He has taken me to the hospital himself 3 times at least this year. One of those times I threw up 15 times in two days. We had to pull over multiple times on the way to the hospital so I could get sick. I’m still struggling to get health insurance. I have been trying for Medicaid since Christmas 2021 and it’s now March 2022. I almost laugh I am not even sure where to go now. In my last hospital visit, they told me I had a 4-inch cyst. That was last August I believe. I actually had a doctor tell me it was 4 cm basically saying I was wrong. I brought proof to the office. I had a cd with all the images because I ask the hospital to give it to me I knew no one would’ve believed me otherwise. He came back and apologized to me.

Not respecting my wishes

It’s so hard every one telling me I’m lying. I don’t know what my next step is, honestly want a hysterectomy bc I can’t enjoy my life due to this pain I’m tired all the time my body is tired, my mind is tired. I went to see my gynecologist last November yet again she didn’t believe me about my cyst. I know it keeps growing to this day. She just put me aside. I can't get a hysterectomy no one wants to take away my “women hood." What they don’t realize is I can’t even enjoy my 20s. They want me to wait until I’m in my 40s to take it all out. I can’t imagine 20 more years of this. I can’t even have children my doctor told me it would be hard to conceive I can carry just not conceive bc of all the tissue growth. I could do IVF but that’s insanely expensive.

I'd rather not deal with the pain

Not having kids doesn’t bother me. I can’t deal with this pain anymore. It sucks. I look terrible, my self-image is depleted. Now every time I have my period I wake up feeling like I could pass out all day long and, that last the whole time of my cycle, I walk around like I have an empty battery and no charger. I can’t even make a thought when I feel like that I’m focusing on not passing out. I feel like this is so serious everyone just pushes me aside. There is no help for us rarely, I can’t get anyone to listen to me.

It means a lot

So I want to thank you if you have read this far. You listened to me and that means a lot. I am sorry to everyone who struggles with this we are in this together. This is the short version of my story. I’d have to write a book to give all details. I am thankful for platforms like this to let me vent and educate those who need it.