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Charly’s Story (Endometriosis)

Charly's Story (Endometriosis)My name is Charly and I’m 24-years-old. I was diagnosed with endometriosis at the age of 16 after my lap sugery and was told I would never have kids, not something that most 16-year-olds hear. Well, after that I was mostly pain-free for 6 months.  I tried 4 different types of birth control pills to supress the endo. When that failed, I had the depo shot 2 weeks before my 18th birthday, which was awful! I don’t do well with hormones.

Well, by the grace of God, six months later I found out I was pregnant. I never thought I could have kids. After my daughter was born, my endometriosis got worse. I had my period for 6 months straight except for stopping a couple days, here and there, so I got an IUD which didn’t help.

After trying everything to stop it, I had no choice but to have my uterus & cervix removed at the age of 20. Now, after all that, I still hurt all the time and have complex cysts every couple months. Most of the time, I can’t even make love to my husband who has stood by me since I was 17. This disease has wore me down. I’m ready to schedule another lap surgery to try and remove more and, hopefully, have some relief.

Thanks for letting me share my story. I feel alone in this battle most days. I don’t know anyone else who has it. God bless ya’ll and thank you.

North Carolina
Submitted 2-27-12

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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  1. mo

    Sharing you story is hard to do, thanks. I hope in time you will find some relief.

  2. jessica

    I understand how you feel, no one ever seems to really get how hard it is living with this disease.

  3. Brittany

    You arent alone. I am 27 yrs old and have endo as well (stage 3). I understand the feelings of hopelessness, isolation, and also the fact that alot of people judge what they dont understand. I have had 2 laps in 2 yrs, my most recent June 2012. I have gotten to the point where I am in pain daily and just getting out of bed is a chore. If you need some support, please feel free to email me. I dont think people realize, this illness ruins lives, diminishes your self worth, causes awful chronic fatigue and even worse pain. We all need somebody in our corner, and I find talking to other girls in our situation helps. Stay strong and dont give up!! xo

  4. lou

    I, too, at 16 was told the same thing. Therin is where my story changed. After 2 failed marriages, I was never able to conceive a child. Cmplete Hysto at age 39. My insides were a total mess (I have pics to prove this) It took that many years for me to get free from the pain of this disease even though it meant NO CHANCE of my own cild EVER!

  5. emily

    Hey my name is emily. I’m 28 years old. I also feel alone in my diseases. My story began after I was married at 19. I had been on birthcontrol since I was 15. Well I decided to come off the birth control at about 20 in order for my husband and I to try and conceive. well that’s when all hell broke loose. I started gaining weight like crazy. I was gaining about 20 pounds a month. I started at 130 pounds and it didn’t stop until I was about 220. The doctors couldn’t figure it out they figured it was my thyroid or the fact that I had just gained it from getting married. I was beside myself in discust on how big I had gotten. They would just throw diet pills at me which I couldn’t stant do to the racing heart. Seems like for a year or two no one could figure out what was wrong with me. Then a doctor gave me fertility drugs that didn’t work. It just made a huge cyst the size of a grapefruit. Then when I switched doctors they found that I had polycystic ovarian syndrome. So I was glad someone figured it out but not happy I had it. Then I started having more pain a few years later. I got a lap done and they also found endometriosis. I was so distraught because that meant I have two incurable and painful diseases. Everyday is also a struggle with me because of the pain and the mental effects it can have on a person. I suffer with depression as well. I’m still 220 and have no children after 9 years. They are gonna try the lupron shot on me and then id that doesn’t work I have to have a complete removal of my uterus and ovaries. My husband has been with me thrugh all of this and half the time we can’t make love because of my pain. I feel that I let him down. I can’t give him any children. This is such a struggle everyday. It effects soo much the quality of life. It seems no one I know understands this and can’t understand what’s wrong with me. They treat me like a hypocondriact.

  6. Barbara

    I found out right after I turned 18,, that I had endometriosis. After I was told it was a kidney infection, because there was blood in my urine…..I was having my extremely painful period at the time. I was sent in for an emergency laparoscopic surgery, where they found the problem. The doctor that did the surgery when I went back to her a week later, she says “you have endometriosis, I can’t explain it to you I have to get to surgery, but you may never have children. Thanks for coming in, I have to go.” At 18 I was sitting there in shock, not knowing what this was exactly. I did in fact have a child 18 months later and my 2nd 5 years later. After that one the pain was so excruciating that by the time I was 31 I finally had a total hysterectomy. I was finally pain free !!!!!

  7. Tiana

    I have endometriosis too. Your story gives me hope. I’m 24 and really want to have Child one day. I wish you the best and hope you are pain free one day.

  8. Mary

    After 3 lap’s, major surgery, 5 years of hormonal treatment including chemically induced menopause, my 5 year old miracle is bugging me to go for a walk. We were told we can never have children. He did look a bit squashed after birth apparently from the “worse scarring” the Dr had ever seen. Keep hoping. Keep trying. My love and thoughts are with you in your toughest times.

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