Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

This Isn't Normal, Even For Me

by Kylee
(United States)

I got my period when I was 13 years old. I missed school every month because of the agonising pain. I never knew when my period was going to occur. I never knew how long it was going to last. By the time I was 15, I had my first pap and ultrasound.

However, I was told I had "bad periods" and was put on the "cure for everything"-the pill. However, it was just the first of many. By 17, I had been on 3 different pills total. I got pregnant before I turned 18, and gave birth vaginally to a healthy baby boy. Shortly after, pregnant again. Another successful vaginal birth to a healthy baby girl.

Refusing the pill, I got the implant in my arm in March of 2014. I've always had irregular periods, but this was new. I bled for weeks at a time. Once again, never knowing when it was going to occur, or how long it would last. And once again, still enduring the pain.

Finally, in May of 2016, my body told me enough was enough. I made a trip to the ER with extreme pain and bleeding. More than I had experienced. While I was there, I was told I had a miscarriage and that I had a 3cm cyst on my left ovary. A week later, an appointment with a gyn. There, I was told I could either get my birth control taken out, or I could have my cyst looked at.

Not thinking a lot about it, I got the implant out of my arm. They scheduled me another appointment in November because of an abnormal pap. Until then, another type of pill. Come November, I was told they were not going to investigate my cyst any further because "it didn't look cancerous and every woman gets them, blah blah blah".

I had blood work drawn that they called to tell me was normal, and never heard another word about anything else. I was still bleeding heavily and irregularly. And, believe it or not, I was put on ANOTHER pill. Yes, that makes 6 birth controls since I was 13 with no relief of any of my symptoms.

Near the end of November, my body sent me another sign. This time, I could not ignore it. I was bleeding through a super tampon AND a thick pad into my clothes. With enormous blood clots. Every 30-45 minutes. There were blood clots on tampons, clots in the toilet when I urinated, and clots on the toilet paper when I was finished. Every time, for over a week.

This time, I called a gyn outside of my city. They were able to get me in that week. When he stepped into the room and I told him everything that had been going on, he is the one who brought up endometriosis. Of course I'd been doing research of my own, which only made me even more angry at the lack of knowledge and sympathy previous doctors have had.

He performed a pap and sent me to get an ultrasound. The ultrasound tech was not able to locate my ovaries vaginally. After doing an abdominal ultrasound, I learned that 3cm cyst was now a 6cm cyst, I had hard cysts on my right ovary, and that my right ovary looked abnormal. I also had blood drawn. At my next appointment a week later, it was confirmed that my CA-125 levels were positive, but that he didn't believe them to be cancerous.

I go for a pelvic MRI on January 9th. And from there, a laparoscopy and hysteroscopy. Ladies, do not ignore your body. And do not automatically accept what one doctor may tell you. And most importantly, do not let them tell you the pill will fix everything. Because it won't.

I'm 22 years old, and yes, I've been lucky enough to have 2 beautiful and healthy children. However, any hopes of having another some day for my husband and I are put on hold. I know not everyone has this opportunity, and for that I am truly sorry. But if more women and doctors especially, are more educated on this subject, it could save more women from heartbreak.

I have severe migraines, I cannot keep up with my wonderful children, I take welbutrin for my depression, I have severe abdominal pain and VERY irregular bleeding. I'm constipated, and I feel like never getting out of bed. There is a reason for this. Do not let anyone tell you it is normal like they have me. Because it is FAR from normal.

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