A journey with Endometriosis !

Exactly a year back on this day, I had to go under the knife not to beautify myself??but to survive!

One morning early April’2020, I knew that something was very wrong with me and I decided get a detailed check-up done despite all the pandemic restrictions and chaos. Few hours later, in one of the hospitals in Bangalore, I was going through an ultrasound and the technical specialist behind the machine was asking me weird questions like “where do I stay”, “why no one was there with me at the hospital” etc … I just knew from the conversation & gestures something was not right. Although I tried talking to him, he insisted I speak to my gynecologists' immediately. So, I was given the Big “C” test, CA 125.

CA125 results take 24 hours approximately, so once I had given my samples, this drive back alone home was the hardest one in my life.

From that moment till last year this time 17’Sept’21, this year and a half was an intense phase.

I was given CA125 repeatedly every quarter and as obvious each time until the results came clean – my whole life flashed before me and I kept pondering on “how long do I have”

I was diagnosed with a stage four Deep Infiltrated Endometriosis after multiple diagnosis. This is a form of severe disorder caused due to high levels of ESTROGEN (female hormones). It causes tissues to grow in pelvic area. There are medical evidences that severe endometriosis could invade vital organs like kidneys, eyes, liver, pancreas, brain, bone heart, skin & even nasal cavity.

By the way, the deeper you will dive on the topic of Cervical or Ovarian cancer you will get to know that CA125 is an indicative test and not a confirmatory test.?So, although endometriosis was confirmed, no one could rule out the BIG “C” unless frozen section biopsy was done- which again meant “under the knife”. There are arguments that severe endometriosis is highly prone to “C” - you will have a lot of different and clashing opinions, journals & theories on the internet – everything only indicative.?

The symptoms of Deep Infiltrated Endometriosis are “excruciating pain”.

I was referred from one hospital to the other, one best specialist to the other until I reached the doors of the best gynecologists & oncologist in Bangalore.

Endometriosis does not get into stage 3 or 4 in weeks, this disease develops through years and the problem is you might NOT know whether it is a normal pain or discomfort or an endometriotic pain.

I had never been a very strong athletic human being, nevertheless, I always watched out what I consumed. This is not a recent consciousness, but this is how I have been childhood. Information over the internet indicate potential reasons of endometriosis as junk food, stress & alcohol. Eating clean, green tea etc can reduce instances – I do not believe this information anymore??. Since many years, I have been eating clean and I live on green tea & chamomile tea which seems to have negative impact on endometriosis - so like many other grieving unfortunate patients, first I had cursed this information and second, I have regretted, wondered and cried, got into a “Why me?” mode.

Appears, since the time my son was born, end of 2012, endometriosis kicked in. I remember enduring pain few initial years, going to multiple gynecologists, most gave me medication with lesser diagnosis and then my pain increased, never got any relief, so I gave up. Sometimes, I would mention this to my family & friends whoever I could – a majority gave me the generic advise “pain happens to all women during her monthly cycles” – so again, I just gave up!

I remember those years, I would take intense painkillers as many as a possible in a day to keep pain out of my way & continue with my life – the job, the child the family everything else even social engagement. The next few years continued, each year with a different level of elevated pain until later by 2019 my situation got so worst that strongest painkillers stopped working for me. I had to call off at work few times which I had never done in the past & I even passed out few times due to extreme pain.

Pain happens because tissue grows and bleeds in that area where it cannot easily get out of your body. To describe the pain – you may feel like thousands of needles invading you a one-time continually – sharp stabbing, you might also feel that someone is pulling your organs out??. Endometriosis symptoms can at times impact a person’s life to an extent that one can be eligible for social disability benefits.

I had to go through a complete hysterectomy a year back to rule out the scope of the big “C” in my life. Complete hysterectomy has its own set of pros & cons – but most importantly it has ruled out the scope of the BIG “C” for me and many others like me for the moment. Yes, I feel totally “out of the woods” right now – both physically & emotionally ??.

My heart goes out to those who were detected positive in the Big “C” tests, those who had to undergo the treatments, those who lost their own lives or their loved ones to it. May the world be a place without the Big “C” one day.

There have been some losses, pain and some learning & redirection. I had abandoned this “Why me” feeling before my surgery last year. The best that this journey did was it made me “STOP” for a while.?I paused. This journey started during the pandemic. This was the time – so many lost their lives to the pandemic, so many well-known celebrities and normal people lost their lives suddenly out of the blue.

I did reflect back on was I really living a fulfilled life – if I really had only a few more years, weeks or days – like I felt when the big “C” test reports were yet to come – what would I do with this limited time? I have immense gratitude for whatever happened so far in life!

You never know what’s round the corner – life can be surprising both good and bad, while we can keep trying to be in the best of our health, no one can guarantee longevity. Nothing really matters than the moments that you have now.

I made those difficult decisions that I was earlier waiting for – I now have a bucket list of “to do’s” secretive for now ??, but you will hear more if you keep following me.

So, a BIG shout out to all the beautiful, lovely women out there – if you are going through excruciating pain month over month and something doesn’t feel right – INSIST on a detailed diagnosis. I regret that it took me 8 years to analyze what my body was going through & got the courage to insist on diagnosis only to be detected of a disorder at a much-elevated stage when the symptoms could no longer be managed.

So, do all those things that you have planned to do later – whether it the next job, the family, a trip, a relationship or just a friend that you have waiting to go back to – do it within reasonable time.

Remember to live!