Endometriosis story

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

Severely altered my teenage years..

by Danielle
(United States)

Ever since I got my period back when I was 9 years old I have dealt with horrible cramps. I was the girl who started developing before any of the other girls in my class. It didn't phase my family, for my mother, too, got her period young and dealt with bad cramps.

When I was 14 years of age I was put on birth control due to my excruciating pain. It was not normal in society to be 14 and on birth control but the doctors said I had no choice. Every month I would experience agonizing pain in my lower stomach and also my lower back. Something was not right.

By the time I was 15 the pain had got so bad that I began missing school more and more. My period would last almost two weeks and would be so heavy. I didn't understand. Nothing worked for me. Being a young girl and constantly switching medicines, I gained a lot of weight. From being in bed for weeks on end to constantly taking new medicine - I developed an eating disorder due to the constant weight gain. Then came the depression, lack of a social life, and dysfunctional family.

By the time I turned 16 I had every test there were, including and ultrasound. No doctor could figure out what was wrong with me. Everything would come back normal, so I was told. I also began to develop issues with my bowels where I either could not go or I couldn't stop. Then it would be all blood. This was not normal either.
In my opinion, at 16 years old I should have never have dealt with any of this but doctors told me it was normal.

Then I stopped taking my birth control as I felt it wasn't working for me. For another year I continued to deal with the pain and missing school. I was hopeless.

A high honor student who made straight A's every semester was now a year behind in school because of excruciating pain. It wasn't fair to me. Having to constantly see new doctors and try new medicines was terribly hard on my body both mentally and physically.

One day I couldn't take it anymore and went and saw yet another new doctor. She put me on several antibiotics, as she believed I had an infection. She scheduled me an ultrasound to see if anything would show. To my surprise, the technician who gave me the ultrasound advised me that this was my "follow up" to see if I still had ovarian cysts. This was news to me. After years of having tests and no answers, FINALLY someone could tell me what was going on. And why didn't my doctor tell me a year before when they clearly saw cysts? As I had been missing almost a whole semester of school from appointments and at times not even able to move.

That ultrasound showed cysts on both the right and left ovaries. At that point they scheduled me with a surgeon. It was not normal for me to be having this kind of pain, and clearly the cysts were not going away.

A week later I went in for surgery. When I woke up I was told I had Endometriosis. A condition very unfamiliar to me or my family. I had never known or heard of such.

Now I am 18 years old and continually deal with the disease. With no cure, all I have is birth control pills to control it from spreading throughout my organs. Unfortunately I have it in my bowels and all throughout my reproductive organs.

I can't say enough how thankful I am to finally have an answer, but truthfully I am scared out of my mind.

Being so young and having to deal with Endometriosis is terribly life changing. I continue to have bad days with pain that takes over my life, but at least now I am able to understand my condition fully and learn to better help myself.

Ever since I was young I dreamed of having a wonderful family, and now knowing that might not happen, scares me.

I try not to give up as I hope for the best, but I feel for any girl or women who deals with this condition as it has changed my life completely.
Never give up on yourself. No matter what a doctor tells you, YOU know your body more then anyone else.
I wish you all the best-

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