The Mighty Logo

What I Wish I'd Known Before My First Surgery for Endometriosis

For years I always thought my painful periods were normal and just part of growing up. It wasn’t until I was 26 that I received my diagnosis: endometriosis. My doctor scheduled me for laparoscopic surgery to confirm what she already knew. I felt relieved. There was actually something wrong with me and someone was willing to help. I only wish I knew what I know now.

At my follow-up appointment, my doctor showed me the pictures where she found the endometriosis. She made it seem so simple. She had burned off as much as she could and so as long as I continually took my birth control, I wouldn’t have a period and therefore wouldn’t be in so much pain. I was ecstatic. I thought I was finally going to be cured. All those years of periods which made me so nauseous I would throw up for at least the first two days and made me want to sleep all the time so I didn’t feel the excruciating pain were going to be over. Unfortunately, it was only temporary.

Six months later I was back in her office complaining that even though I wasn’t having a period, I was still hurting and nauseous. A second birth control pill was added to my morning routine. Once again it worked for a little while and then the pain came back. Approximately a year after my surgery I was sitting in her office hoping that she would have some more options for me. I was wrong. She told me the only choice I had was to take a drug which would put me into medical menopause for a year to see if that would lessen my symptoms. To me the risk didn’t outweigh the possibility of relief, so I told her I didn’t want to do that. She looked at me and told me there was nothing more she could do for me.

I was devastated. No one had told me it was going to be this bad. I thought the surgery and birth control were supposed to fix it. I had reached the point where I was having more pain and nauseous days than good days. I was exhausted no matter how much I slept and the depression and anxiety I had fought and defeated when I was younger had come back with a vengeance. I didn’t know what to do, but I knew there had to be something else to try.

A year later I relocated for a job and was lucky enough to have a coworker suggest an OBGYN in our area. I went into the appointment preparing to be let down and expecting to get the same answer I had gotten back home. I was wrong. She listened to me and gave me options. I’m scheduled for surgery in November and she is optimistic that I can finally get some relief. I only wish it hadn’t taken three years to get to this point.

Looking back, I wish my first doctor would have been more forward with me about the fact that there is no “cure” for my endometriosis. I wish I would have known the effect it was going to have on my daily life. It is so much more than just painful cramps. It can affect you mentally and physically to the point that your good day may be a normal person’s bad day. I’m praying I am finally on the path to getting some of my life back. I shouldn’t feel like I’m 80 years old when I’m only 30.

To the ladies who are struggling, keep fighting. Most importantly, never settle for someone telling you there isn’t anything more they can do. Keep looking for that doctor who will fight this battle with you.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Kwangmoozaa.

Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home