Endometriosis story


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





Over twenty years with textbook symptoms before someone took me seriously

by Nicole
(Austin, TX)

I started my period young, 10 years old. I had such heavy periods even then, with severe cramping. My mother, who had extremely light periods, complained that I was "attention seeking". When I finally saw an OBGYN when I was 18, I was put on the pill and told that "every woman gets cramps".

The heavy bleeding, clotting, migraines, severe bloating and cramping, and intestinal issues were having such a significant impact on my life that I would have tried anything to get some relief. But my OBGYN insisted that there was nothing wrong with me and that I needed to take Pamprin and "buck up".

Then, about ten years ago, I developed insistent pain on my left side. I endured ultrasound after ultrasound, and always being told that "there's nothing in the scans". I was defeated and even questioned whether I was simply too much of a complainer.

Meanwhile, my sex life with my husband was non-existent due to the stabbing pain during sex, and the bleeding that always happened the next day (that is, if I wasn't already bleeding heavily from erratic periods).

Then, at age 36, my OBGYN changed my birth control pill. I bled every day for nine months straight. Every month I would call the office to let them know I was still bleeding and every month they would say that the doctor told them to tell me "your body is still adjusting to the medication".

Nine months - I was dizzy from so much blood loss and ruined every single pair of panties I owned, every set of sheets I had, and went through a box of super tampons plus pads every month.

When I couldn't go from the toilet to the shower without bleeding all over my bathroom floor, I snapped. I sobbed as I told the doctor's nurse that I was hemorrhaging. Finally, they made me an appointment - for three days later. The doctor told me that she would do a D&C, an ablation, and tie my tubes. I thought it was the end of my suffering.

My surgery took far longer than the 45 minutes. Apparently, endo had sealed my left fallopian tube to my left ovary. But she simply yanked it free, snipped the tube, and then did the right side.

No investigatory looks to see if it was any worse than that. She didn't even do the ablation because I had already made her "off schedule". When I asked her about whether the endometriosis was causing me all of my issues, she dismissed it.

At that point, I knew I had endometriosis but I had no idea how bad it was. I still had severe periods, cramping, bleeding, clots. I moved out of state and researched to find a doctor who would help me.

Unfortunately, my new doctor had me come in for more expensive ultrasounds to look at a "growth" on my left ovary. I had had so much pain on my left side for years that I now was advocating for him to just remove it. But instead, he wanted to keep doing ultrasounds every 3 weeks while prescribing me progestrin.

Only when my insurance changed 9 months later did I learn why he didn't want to help me. His billing assistant called me and said "Did you know with your new insurance that fertility treatments are no longer covered?". That's odd I said because I wasn't ever seeing him for fertility treatments because I had my tubes tied a few years ago. I'm seeing him for my endometriosis.

She got quiet and then said, "Oh, my mistake." But my next appointment was horrifying. He jammed an ultrasound wand in my body, twisted it to the right side and announced to the group of medical students in attendance that there was nothing wrong with me. When I told him that it was the left side, he withdrew the wand and left the room without saying a word to me. I was humiliated and cried in the parking lot.

I avoided going to another OBGYN for 3 years after that, knowing that no one was going to take me seriously and I had to learn to live with my pain.

But then, I moved again to a new town. And I had a situation where I really needed to get checked out by a doctor. I asked my new doctor's staff if they could recommend someone. They sent me to my guardian angel. She reviewed my history, asked lots of questions, and sent me to get the long overdue ablation.

Unfortunately, it didn't do much to alleviate my horrific cramps and the clots were returning. She recommended that I think about a hysterectomy. I was fine with that option and asked her for recommendations for a surgeon who was also experienced with operating on patients with endometriosis. A few months later, I had my surgery.

When I woke up from surgery, the doctor told me gently that I had Stage 4 endometriosis. It was one of the worst cases he had seen and that my surgery tested the limits of his skills. It was finally confirmation of what I had suspected for decades and instead of being upset, I was finally relieved that I had an answer.

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