Right before my 15th birthday, I began to have bad stomach pain. Visit after visit the doctor would tell me that my body was changing and it was just a stomachache and that I should take Tylenol and rest. I never really had heavy periods but the pain that would occur and the pressure were unbearable. Again, just take Tylenol it’s all part of becoming a woman. My cycle would be at the most 3 days and would require nothing more than a panty liner. Friends all called me lucky. When I was 17, May 1998, I had an explosion of pain and nausea. The pain was so blinding I fell to the floor while at work. They rushed to the ER. This was the first time anyone mentioned Endometriosis to me. I didn’t have google so they explained to the best of their ability what it was. They also explained that “because of insurance we can not diagnose you. You must follow up with a gynecologist”. Okay, what does all that mean? I was a junior in HS. At the end of my junior year. Looking at graduating next spring. I had all A’s and B’s, didn’t miss school and was a part of so many extracurricular activities that my mom couldn’t keep up with them.
I indeed did the follow-up and was told it looked bad but they wouldn’t know the full extent until they did an exploratory laparoscopic surgery procedure. It was such an emergency I had it scheduled before I left the office for the following week. After surgery they had me come in for a follow-up. During my appointment, they explained this was the worst case in his 30 years of practice he had ever seen, showed me an actual video of my procedure and let me know that if I wanted to have any type of normal life I needed to schedule a hysterectomy. Um, I’m 17. I’m supposed to be worried about college and graduation and what to do during the summer. I left putting my foot down, I wouldn’t do a hysterectomy at this time and I was getting a second opinion.
For the next few years, I tried all dosages of birth control pills possible and of course just about every prescription pain pill known to mankind to get through a day will only a dull ache or pain and not the full blow. I attended my senior year but slept through about 90% of it. I didn’t graduate and tried to repeat my senior year only to drop out and get my GED. See, because of the surgery I missed more than 10 days of school and automatically failed my 2nd semester of junior year. I only needed 2 credits to graduate but between doctor appointments and medication, I physically couldn’t do it.
In 2003, I had my 2nd exploratory surgery. I had pain so bad I could even change positions in bed. The medication gave migraines so between it all I stayed in a state of fogginess. So we tried Depo-Lupron. I did 3 different rounds of this 2 years apart and in the middle doing birth control pills or Depo-Prevera. This was my life.
I say all this for those struggling, for those just starting out or even those in the middle. See, I knew one day I wanted kids and I’d be happy with just one. One that I could show love to that wasn’t easily shown to me when I was a child. Why does all this matter? My physician and I talked about me wanting a baby as part of my treatment plans. We did what we had to do to maintain or eliminate pain until the time was right. Then he prayed and walked me through having the faith to move forward. My husband and I were together 7 years before we got pregnant. It wasn’t an easy pregnancy and the endometriosis came back with such vengeance, almost like it was mad, that I immediately had to go back on maintenance for the endometriosis when I had my son in 2010.
We talked about eventually trying for a 2nd. He understood and didn’t pressure me. In 2015, we began trying for number 2. I lived on daily pain afraid to take anything to hurt a possible conception. It got to the point of pain so bad I avoided sex altogether but that kind of defeats the purpose. In 2017, I was hospitalized for a large ruptured cyst. It was so bad it was still leaking at my followup 3 days later. At this point we checked my AMH, I was 36 and it was a low .03. That’s nothing. So he sat me down and gave me my options. My first best option, a full hysterectomy. I gave up. I cried. I mourned. I was depressed. After a month of doctor appointments, blood is drawn, more medication I decided okay let’s do it. I need to be me again without pain and be the best mom to my son possible.
I went in November 2017 to get a Depo-Prevera injection to calm the pain prior to surgery. Only my pee stick was positive. They figured another cyst, maybe inflammation in my tubes, I mean I have no hormones! So we did a blood test. Again, everything was off. So we scheduled an ultrasound to see what exactly was causing the problem. Once that wand hit my stomach we found my baby miracle girl 12 weeks old. I had no symptoms, I had an idea. It was a rough pregnancy and I am back to where I was before her discovery- looking at a full hysterectomy.
I look at my story as hope. It’s not fully written yet. I didn’t take my doctor at his word, I found one that would fight for me. I found one that wanted me to have my dreams. I struggle daily and have for 20+ years but in the end, I found support to get me my dreams of a family of my own. I know the path isn’t for everyone but I hope you can find hope and faith and restore those for yourself in my story.
