Back in 1987, when I got my periods at the age of 10, my family was slightly shocked. Ten was considered too early to start your menstruation cycle. However, thankfully, my mother, who went through a lot of menstrual problems herself, was knowledgeable enough to guide me through the process.
My brief introduction to PCOD
All seemed okay until two years later when my periods got irregular, and showed, what I now know, the first sign of PCOD: polycystic ovary disease.
My mother took me to a gynaecologist who introduced us to the term PCOD. However, he did not bother explaining the issue to us in detail, perhaps thinking that I was too young, or that my family would not react too well to such a ‘problem’. I remember he had put a question mark on my file, perhaps wondering himself, if I had the condition or would most likely develop it in the future.
All was rosy until I had irregular periods
Twelve-year-old me couldn’t care less, and up until I turned 18. I suddenly saw my period cycle reducing from five to two days. Honestly, I felt blessed — only two days of dealing with the pain. I had no clue that this was again a symptom of what was to come. I soon got a bad case of acne all over my face, my periods got painful, and I started putting on a lot of weight. I freaked out a little and went to visit my gynaecologist, who then confirmed that I had PCOD.
Because I had a lot of friends who were doctors themselves, I thankfully knew more about PCOD than most girls at that point, and when the doctor put me on medication, I happily obliged. However, I felt like I bloated up overnight thanks to those pills, but in the end, I reasoned that my PCOD was taken care of.
The tricky post-marriage dilemma: surgery or no surgery?
Three years after that, I got married, and that was when things started taking an ugly turn. I was a complete wreck during the time I got my periods. I couldn’t even move, and that’s when my gynaecologist advised that I got surgery to remove my cysts. My husband, who was a doctor himself, wasn’t too keen with me getting a surgery, especially since I hadn’t conceived.
We both decided to skip the surgery, and my in-laws put me on some form of homoeopathy medication that seemed to have taken care of the cysts. I guess I got lucky. I conceived soon afterwards, and I even had a normal delivery – something that was unheard of if you had PCOD.
About six months after my son was born, all my problems came back, with a vengeance. My pain during my menstrual cycle was so bad I couldn’t even move, and while I was bleeding way less, the pain used to stop me from doing anything else. This time when I went to get another sonography, things had taken a turn for the worst. I had developed chocolate cysts, which only sounds nice but spells terror.
Life after getting the surgery
I now had a large number of cysts in both of my ovaries. This time I decide to undergo surgery and get them removed. I was taking hormonal medicines; my weight shot up from 62 kgs to 80 kgs. I had to take injections for the next four months, during which I didn’t get my periods.
Despite the surgery, once I got my periods, the pain was… terrible. I couldn’t move for days. I would have immense pain during my cycle, after which five days were okay, and then the pain returned and stayed till my period ended. I had to even quit my job because I couldn’t deal with the pain.
An oncologist friend of mine then suggested that I get an MRI scan done to understand what the problem was.
The problem was bigger than PCOD
I did and discovered that I now had something far bigger than PCOD: I was diagnosed with Adenomyosis. This is when the tissue that usually lines the uterus grows inside the muscular wall of the uterus. I was 35 at this point, so a hysterotomy wasn’t advised.
My gynaecologist removed the Adenomyosis lining through radiation. A Mirena was inserted into my uterus – a T-shaped plastic frame that releases a type of hormone – and my uterus size was reduced by 1/3rd. My period pains didn’t go away post this either and Mirena doesn’t let the lining form outside the uterus, which meant that I was bleeding daily. Imagine wearing a pad every day! It was terrible.
Worse still, within a year of the second surgery, my pains returned, and my doctor suggested putting me on birth control pills to take care of it. I agreed, and that was the worst decision of my life. I was now 104 kgs. It was truly horrible – emotionally, mentally and physically.
The final decision of getting hysterotomy
I finally took a call and told my doctor that I had enough. I didn’t care if I didn’t have a uterus, but I couldn’t live like this anymore. I was done, and I wanted a hysterotomy. I had to convince my gynaecologist because he felt that I was too young, but I had made my decision. I wanted this organ out of my body.
Last year, in June, at the age of 38, I got my hysterotomy done. I now only have my right ovary as it was healthier in comparison and since then, life has been really good.
PCOD, in my opinion, is just the start of something bigger and if you do not take care of it, it can lead to far bigger problems. For example, Adenomyosis can only be detected through an MRI and not via sonography which most gynaecologists rely on. I also feel that the advice of walking, doing yoga, and eating right is all humbug. Once you have PCOD, you get on to a vicious cycle.
The medicines that help cure it make you put on weight and once you put on weight the problem intensified. If I could have, I would have opted for a hysterotomy in my twenties and avoid the pain.
However, in our country, we give so much importance to having kids that we overlook everything else. We are ready to live a painful life as long as we can have kids. I mean I lived through the pain that felt like I was in labour 24X7 and at the end of the day I lost some of my best years, doubled up in pain, feeling confused, depressed, unhealthy and sad.
No event is ever the end of life
The reason I want to share my story is to make women realise that nothing – not PCOD, not a hysterotomy – is the end of life. You always have a way to make your life better, and it’s high time you put yourself first and do what makes you feel happy and fit as opposed to what the world expects of you.
As told to Ainee Nizami