My grandmother had endometriosis. My mother had endometriosis. My aunt had endometriosis. It was running in a direct line through all the females on my mother’s side of my family. They all had it bad. They all had hysterectomies before they were 40 years old. I remember my mother’s emergency surgery to remove her uterus. It was completely fused to all of her other organs and they had to basically scrape it off her bladder and bowels. But endometriosis was never something that I ever really contemplated until I got my first period when I was 13.
My first period was heavy, painful and prolonged. It lasted 18 days. I was so sick I could hardly drag myself out of bed by the end of the second week and my mother had to help me to the bathroom. After that, I didn’t get my period again for a few months. But when it came back it was just as bad, if not worse. I got dizzy, vomited, and can recall laying on the kitchen floor sobbing and clutching at my pelvis while my mother cooked dinner.
About 12 months and several excrutiating periods later, my mother took me to see a doctor. She explained to him my problems and suggested that I had endometriosis. The doctor actually laughed at her. “Don’t worry,” he said merrily. “It’s impossible for a 14 year old girl to have endometriosis.” He gave me a prescription for the contraceptive pill to regulate my cycle and sent us on our way.
The pill became my lifeline. After a while I started skipping every second month of sugar pills, then two months at a time and then three. Soon I was only having my period a couple of times a year. They were still ridiculously painful but they only lasted for 8 days or so.
Over the years I went and saw several doctors and specialists about my heavy, painful periods. None of them had any real suggestions about what was causing my problems. One doctor suggested my symptoms might ease if I got pregnant (I was 16 years old and my mother never took me to see her again), another doctor suggested a hysterectomy might help (another doctor I never saw again).
Finally when I was 24 I went to see a new gynecologist for a totally unrelated reason and I mentioned to him my problems with pain. He said it was probably not endometriosis for two logical reasons:
a) I’d been on the pill since I was 14 years old and the pill slows and stops endometriosis from growing; and
b) I’d also been a vegetarian since I was 14 and leading a vegetarian lifestyle significantly inhibits the growth of endometriosis.
But he suggested if I was really that worried he would be willing to perform a laparoscopy for diagnostic purposes to have a look at what was going on inside my reproductive system. On the day of my surgery as the anaesthetist put me to sleep I remember sobbing because I was so nervous. When I woke up the doctor told me not only did I have endometriosis, but it was severe. It was on both my ovaries, my bladder, my bowels, my pouch of douglas. Basically everywhere you could have it, I had it. And for me it was most severe in the most rarest of places. He said I should start thinking about having children immediately if I wanted to have them at all. He said to start trying as soon as possible, but even at 24 years old I might have to resort to IVF.
The colour drained out of my husband’s face when I told him that. He said he wasn’t ready. He had never envisioned himself having children until he was in his 30s. Here we were in our early 20s and the clock was suddenly ticking for me. We argued about it for a few months. I would break down in tears and say I was missing my chance, he would accuse me of pressuring him unnecessarily.
18 months later, we are in a much better place emotionally and financially. We have money in the bank which is important because we know how expensive babies are. We have a rock solid relationship and are both emotionally and mentally prepared to bring a life into this world.
Endometriosis is going to be one of our biggest hurdles to conceiving. It also significantly increases our chances of miscarriage.
I had an internal ultrasound about 6 months ago and the radiographer told me she couldn’t see too much endometriosis growing back, and that it was growing back as far away from my uterus as it could get (which is a good sign and will make it easier for me to fall pregnant) but only time will tell what will happen with my endometriosis and whether I will need to have surgery again to remove more of it.