Endometriosis: How I survived it

The stabbing pain of Endometriosis (photo credit)

It all started in June 2008. My periods became unbearably painful. I literally had to stop whatever I was doing and clench my teeth to bear the waves of cramps that came every few minutes. This was definitely unusual for me and a cause for worry. Plus it was crippling to not be able to work for a few days a month. I went to see a gynaec - someone I had just started seeing since I had moved to Mumbai only a few months ago. Her first reaction was to do a pregnancy test which was negative. On further discussion, she suspected endometriosis because of the pain pattern I described to her. Endometriosis pain is not like usual cramps that’s mostly around the lower abdomen and the back. It spreads across the rectal area, back, thighs and down the legs too and comes in waves of stabbing pain. 

I came back home and looked up online. Endometriosis is the growth of uterine tissue outside the uterus. The most common cause is known as retrograde menstruation - where some of the the blood that should flow outside the body starts flowing inwards. And this leads to the formation of the tissue around the fallopian tubes, ovaries and sometimes even the intestines. I think the description itself is scary enough. And with debilitating pain, it’s a deadly assault on the body and mind. To make things worse, my online research revealed that this condition has no cure. It’s either painkillers with lifestyle changes or an occasional surgery when the growth gets out of hand. I was rapidly plunging into depression thinking about going through that pain for the rest of my life.

Meanwhile, the doctor prescribed a laparoscopy for further diagnosis and pain killers for the time being. I couldn’t go through with the invasive laparoscopy because I was too scared and had an ultrasound done instead. The reports were normal and the doctor said that the endometrial lesions were probably not too big to be detected. And I was surprised to know that since the pain I went through felt like I was going to die. The funny thing is that the extent of endometriosis (stage 1 to 4) has nothing to do with the severity of the pain experienced. 

The pain killers she put me on - Spasmo proxyvon - an opiate analgesic which can get you addicted in 5 days straight! It almost amounted to being drugged! All it did was make me numb and put me to sleep pretty much all day. I did not want to sit up or eat or do anything else. The other alternative she gave me was to get pregnant asap - a common solution that allopathy offers Endometriosis patients. Pregnancy means no periods for a few months and time for the lesions to heal. What they overlook or don’t tell you is that once your periods are back, Endometriosis is back too! I did not want to have a child as a temporary solution to a medical problem (and I wasn’t even married for a year at that time). So she put me on oral contraceptives to suppress ovulation and bleed less. 

I dreaded the pain all month. It was like a full stop to quality life and the pain was like a punishment. I have no clue who cooked meals or run the house on those days. I recall an incident where my spouse went out to buy bread at 11 in the night to fix some dinner for me and himself after he finished his work. And he had to force me to sit up and have something since all I wanted to do was sleep. 

Life painfully went on like this - despite pain killers and contraceptives - for about 6 months. I was due to visit my husband’s family in Kerala in December 2008. He suggested that we speak to one of his cousins who is a practicing doctor in Ayurveda. That seemed like a ray of hope. I did not even have to explain to her since she herself had gone through this. She prescribed some medicines in Ayurveda and asked me to take them in the right proportion for 6 months. I cannot describe my relief and happiness when I had no pain the first time I got my periods about a month after I started the new medicines. After all the no-cure stories, this definitely seemed like a miracle. (I did have Endometriosis like pain a year later ironically after I had consumed contraceptives for a month to delay periods. I repeated the 6 month course again just to make sure). I have been pain free and healthy since 2009. I went through a series of unrelated tests last year which showed no trace of Endometriosis. Even if the lesions where too small to be detected by ultrasound earlier, they have disappeared now. 

Once the medicines worked for me, it set me thinking about how the world thinks there is no cure to endometriosis and the internet is flooded with articles about managing the pain better. And yet here I was with these set of medicines with visible results in just a month! It’s not a rare condition. A few million women across the world suffer from this. Katrina Kaif went through a surgery for this very condition in 2009. Celina Jaitley, after being diagnosed with it, has been an actively spreading awareness about it. International personalities like Susan Sarandan and Padma Lakshmi have openly talked about it. We need to continue the dialogue. 

I regret not sharing my story with the world for all these years. But #EndometriosisAwarenessMonth seems like the best chance to do it. There’s a lot to be done to spread awareness about the cure to this dreadful condition to women who are going through this dreadful pain month after month. My blog post is my little contribution to getting that word out. Do share this in your network so that people can become aware and find freedom from pain through the miraculous cure that gave me my life back.