Endometriosis story

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

Living life fully now, to make up for the years I lost

by Maria
(Greenville, SC)

I had problems from my very first period at age 13, and it got worse every month. I experienced severe pain, heavy bleeding, huge blood clots, anaemia. My worst memories are bleeding through my clothes at school despite using 2-3 pads at a time and going to the bathroom between every class.

At night I even resorted to stuffing my underwear with diapers to keep from bleeding all over the sheets. I ended up severely depressed and contemplating suicide on a daily basis. I was told to get a grip, all women have periods, but it was plenty obvious that what my female classmates were going through and what I was going through were totally different things!

They came to school wearing white jeans with one tampon tucked into a pocket, while I started wearing a jacket every day, even in summer, so that I'd have something to tie around my waist to hide my bloody clothes. When I was 15 my mother took me to a gynaecologist who put me on heavy-dose (3 a day!) birth control pills.

They made me vomit non-stop for days, and the nausea never went away until I finally stopped taking the pills several months later. In my early 20s I went to a different doctor who put me on a normal dosage of birth control, and this helped for a while. But eventually the symptoms returned.

My doctor retired, so I saw a new one who told me it was all in my head and I needed to stop whining. By then I was 30 years old and missing a lot of days of work. I had also started having severely painful bowel movements with my periods. There were many days when I doubled over onto the floor and couldn't get up.

I did research and suspected I had endometriosis, but my doctor didn't agree. Finally, I kept a written diary of symptoms for 3 months and carried it to his office. I learned that a piece of paper gets a doctor's attention, even if the words are the same ones you've been saying out loud in his office for years.

The next week, I was scheduled for a laparoscopy. When the doctor came into the recovery room afterwards to tell me the results (the severest case of endometriosis he had ever seen), I was relieved to finally have a name for the hell I was going through!

I tried herbal medicine for a while (since my gynaecologist had no answers for me, saying the endometriosis was too advanced), did research to find the best doctors in the region and visited several, and finally arrived in Atlanta, GA, at Dr. Ceana Nezhat's endometriosis clinic.

That was the beginning of my healing process. Over the years I had 4 out-of-town surgeries in Atlanta - laser surgery, endometrial ablation, hysterectomy, and finally, a 7-hour bowel resection (a surgery I wouldn't wish on anyone) to remove 2 areas of my colon that were totally obstructed with endometriosis.

Recovering from that last surgery was tough, but I feel like a new person now. Today I am 52 years old, happily married, and living on a horse farm, which was always my dream. I can hike, ride horses, do yoga. I have my own business.

Endometriosis has shaped who I am, but it no longer defines me. This disease took years of my life that I can't get back, so I live each day to the fullest now.

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