Friday, 12 July 2019

My decade long battle with #Endometriosis : Not a Rant, a Lesson

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We say we reside in a modern world equipped with modern technology which can detect health issues earlier on and treat them at the right time. But why do we still have so many cases of misdiagnosis and why we ourselves miss the signs or plainly keep it concealed as a woman for years for not wanting to bother  our loved ones. Medical negligence, social conditioning, zero self-care, these are not one but multiple issues and thus I am choosing to document my decade long battle with endometriosis here with a prayer no one else gets to bear so much without a reason and each women endeavours and yearns to take care of herself like she does of her family.

It was mid 2008 and doing really well in our respective careers, we intended to plan a baby some years later when we got the news that we were pregnant. Sheepishly smiling we welcomed the new phase of our life. My first ultrasound revealed I had a small intramural fibroid in my uterus which should not grow and hinder the growth of the fetus. By the grace of Almighty, it didn’t grow and we welcomed our little bundle of joy in 32 weeks of gestation due to excess amniotic fluid in 2009.

By 2010 I started experiencing a severe lower abdomen pain for most of the month which grew from worse to worst and almost paralysed me. My physician after symptomatically treating me with painkiller injections and doing all preliminary tests suggested me to meet a gynaecologist who in turn put me on a hormone tablet which over months let to crazy weight gain.

Worried we travelled back to our gynac in Gurgaon who instead put me on OCPs promising that it will ease my pain plus will not lead to the unaccounted weight gain. Nowhere the cause of the pain was ever discussed and it was  I guess assumed by all that the fibroid was the cause of the pain though one of our cousins who is a practising homeopathic doctor has always told us that most fibroids don’t cause pain. Today I look and wonder how ignorant and naive was I, never questioned any doctors for what they are treating, the cause or the symptom.

Then life took its course and we shifted from Delhi to Pune and I continued my battle with pain resorting to popping OCPs and  painkillers frequently, until they stopped aiding me manage my colicky pain. I thus began my journey with gynacs in Pune. The first one I met was a very acclaimed doctor in Magarpatta who advised me to plan a second child to get relief from the pain followed by another famous one in Park Street giving the same advice and alternating me on painkillers injections, antibiotics and hormonal doses which I guess kept on reducing my threshold to bear the pain at all. They made me quit OCPs(oral contraceptive pills) too so that I can conceive but with this pain and my little boy to take care of I was never ready.

After mom passed away in 2006 and dad remarried I have developed the habit of bearing all pain silently though I did sometimes told my husband and brother that this pain is killing me but mostly I maintained my stronger hiding self. Repeated visits to multiple doctors and not getting a cause of the pain have kind of made my husband silently believe that my pain is more of a mental disorder rather than a physical pain. Don’t get me wrong, he has always been my bestie, my lover , my confidante, probably had I been in his place I I would have felt the same. He always told me he was ready to take me to any doctor to get me rid of this and he always did too. I am a woman with a very firm mind and I knew this pain wasn’t mental and there was something seriously wrong but gradually I started trusting him a  little bit too and kept popping painkillers over painkillers most nights to prevent crying out aloud lest they got disturbed. Somehow I wanted to get rid of the pain but didn’t know the cause still, despite of going to the best doctors recommended by closest relatives. 

By 2017, more than seven years into the pain, I had decided to know the cause and try everything to cure myself, that was when came the biggest blow of my life. On the recommendation of a very close friend I met a senior doctor Dr. Avinash Phadnis of Oyster and Pearl Hospital Pune who insulted and humiliated me badly in front of my husband and son that this was my way to torture my husband and it was all a weaved story by me. His language was rough and indignant and he shattered my confidence to a million pieces. I cried for hours that night and decided I will never tell anyone about it even if I die with this pain until one day in July 2018 I passed out at my son’s school gate out of severe pain. People say that my body got all twisted and it took them many minutes to get me back to senses. I walked back home holding my little one’s hand as if nothing has happened.

A couple of weeks later I was in a mall to watch a movie with my family when the excruciating pain made be unable to stand and tears bloated in my eyes but I kept quiet and grabbed a nearby chair. Somehow husband saw me and something struck him really hard. For the next one hour he kept googling for doctors and we got an appointment of Dr. Neelima Agarwal  for 8pm, it was still 8 hours but he got adamant that even if they don’t get dinner that night we will visit her.

Meeting Dr. Neelima was like meeting the angel of my life, in the first time I met her she told me you have endometriosis just my listening to me patiently for half an hour.  She is an elderly lady who has a mother’s touch, I felt she was sent by my mom from heaven’s above to take care of her ailing daughter. She did all my tests, my Cancer Antigen125 reports came out to be 6 times above the permissible value and many nights I slept in the fear of who will take care of little son, mostly in tears and kissing my son and husband alternately who have loved me immensely and unconditionally but never shared it with anyone. Despite of all this I worked everyday and my work, my writings, my academy kept me sane. Also, I always smiled and gave out a lot of positivity to the universe for I believed what you give out to the universe is what you get back in abundance.

Dr. Neelima’s medicines and her warmth and love towards her patients,  cured me for about a year. She wanted to postpone surgery because of my less age and kept me on injections and oral medications until in May this year she realised the disease has already reached 4th stage and recommended us to meet the most renouned laproscopic surgeon of Pune Dr. Shailesh Puntambekar for a second opinion for the surgical Intervention.

I waited for my kid’s school to reopen and met Dr. Shailesh who turned out to be another gem of a guy, Sai has blessed me with. My surgery turned very critical because of the retrieval of a 10 cm mass and adhesion of many organs together which he has to give incision and separate. The surgery took place last Saturday 6th July 2019 and I have 5 more weeks of rest but the care they have give me at Dr. Sailesh Puntambekar Sir’s Galaxy care hospital cannot be expressed in words. I will always be indebted to Dr. Neelima and Puntambekar Sir. I wish I would have met them earlier and saved ten painful years of my life.

Last but not the least I am so grateful to my husband and the love of my life Shobhit who has cared for me day and night last seven days with so much love and to my little sonny who has been the most well behaved kid and hasn’t bothered mom a pence. Thank you so much to all of you for your best wishes and prayers and phone calls. The pain is now in bearable limits and I am starting working from my bed today which wouldn’t have been possible without you all. 

Pls do take good care of yourself and incase you are unwell ensure the cause is getting treated by the right doctors on the right time.


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