My endometriosis diary - part I

I was 27 when when I was diagnosed with severe, grade IV endometriosis. But my diagnosis was seven or eight years too late. To the uninitiated, endometriosis is a disease where the tissue that grows inside the uterus, is found outside on the ovaries, tubes and the pelvis area. This tissue leads to growths that behave exactly like the endometrial lining inside the uterus, which means that during periods when the endometrial lining sheds and bleeds, these growths bleed too. While the endometrial lining from the uterus finds its way out, the blood from these growths stays inside the body causing scar tissue, endometriosis, cysts, blockages in the tubes, extreme pain and infertility. 

Symptoms of endometriosis include painful periods with heavy bleeding, exhaustion, plus gastrointestinal issues like bloating, constipation, nausea and diarrhea. While endometriosis is typically diagnosed seven to ten years too late, in India women suffer for even longer because unmarried women are not checked by gynaecologists. The best way to detect the extent of endometriosis is via a trans-vaginal probe and not an ultrasound over the pelvis. However, in our hospitals we would rather preserve the virginity of an unmarried woman rather than diagnose disease.

There is also this attitude that 'it’s just period pain' and everyone gets it, so most women bear it in silence. I finally went to the doctor when my spotting continued for a whole month. Because my diagnosis was so late I had to bear endless injections, IVFs and surgeries. My first laparoscopic surgery was in 2007, which was completely botched at a hospital in Delhi. I was bleeding for a month and a half after the laparoscopy, which should have been a very simple procedure. The thing with endometriosis is that it is a chronic, progressive disease that spreads rapidly with every period. To heal it completely you need to get pregnant or get a hysteroscopy, and to control it you need birth control pills. Yes, its that weird. 

Endometriosis feeds on the estrogen in your body. When you’re pregnant you are progesterone dominant for nine months, which controls the disease. If you get menopause or get a hysterectomy, again you don’t have estrogen, meaning the disease doesn’t grow. After my first laparoscopy I was given Leuprolide to stop my periods and put me in a menopausal state for a few months. However Leuprolide causes depression, dry skin and weight gain, truly a charming combination (not!). 

Thankfully my doctor in Kuala Lumpur changed Leuprolide to Zoladex injections for six months, which thankfully didn’t cause depression, but made the weight shift from my hips to my stomach. Still, its a decent injection, compared to the other options in the market. Of course you have to militant about taking calcium and vitamin D while taking these shots. Because there is no estrogen in your body your bones became weak like they would for a woman in menopause.

The reason I write this post is not to have a pity party, but to raise awareness about this insidious disease. This first part is raise awareness about endometriosis. If you get extreme pain and bleeding during your periods, visit the gynaecologist. Ask for a trans-vaginal ultrasound to detect the full extent of the disease. And if your doctor suggests birth control pills (BCPs), take them, they're good for you. Among other benefits such as completely pain-free and short periods, BCPs will also give you clear skin. 

And yes, if you also have endometriosis please email me your stories, comment on this post, talk about it. The more we share the more we will help control this seemingly incurable disease. 

To be continued…