Embracing My Scars: How Being the 1 in 10 Has Shaped My Journey

#ENDOMETRIOSIS#ENDOFOUND#INVISIBLEILLNESS

Happy New Year Guys!! You all must be wondering as to why I haven’t written anything since last year. Well, there’s no right or wrong or even a perfect explanation for it. There are multiple reasons. First of all finally I have had my excision surgery 2 months back and since then I have been mostly resting and before the surgery I was busy working and also the most important reason has been that I have had no strength in my hands due to the pain like no physical strength and I have been in a dilemma as to whether I was ready to bring my complete story out but then after giving it a lot of thought I have realized that if my story gives atleast 1 person out there suffering from endometriosis hope I would like my side of the story to be heard out and if possible without judgements. My story isn't about resilience or patience but it's about not being heard and constantly being told that you are a woman so you should bare this pain and move on and it’s about all the women out there who are suffering silently. This one is going to be a really long one so thanks for your patience!!

I think the last time I wrote about endometriosis was 2021 or maybe 2022 and since then because I was not giving much out in terms of a blog post people started assuming that it was gone. I wish it was gone but hell no it did not and on top of that it just started getting worse with time. Endometriosis is like an earthquake which originates from your uterus and shakes up your entire body and you struggle and keep on struggling with your day to day life. When people ask you what’s wrong you don’t seem to have an answer at all.

This post is going to be long but it’s not going to be boring….at least that’s what I am trying to do here. So it’s been 2 months since my surgery and I am still waiting to get better because 1st of all after the surgery I did wake up a bit better and the pain intensity was less and I was able to get my 8 hours sleep and there were teeny tiny improvements here and there for like around 22 days until my pre periods symptoms showed up and I got my 1st period and since then the pain has been insane but since the doctor had already told me that I need to wait for 4 to 6 months to see improvements so here I am waiting and trying to be hopeful that one day maybe I can have a normal life where there’s no pain. I don’t know if I will be all well or not but I do know one thing that bad things don’t last long and that one day I will be able to see the other side of life that’s just perfect soon enough.

Let’s start from the start like from the time I was diagnosed and reminisce my journey with endometriosis together. Oh yes, I forgot to mention one more thing which I was never told before by any of the doctors. There’s something called endometrium thickness which is common and can be cured with basic hormonal therapy and then there’s endometriosis which is a very different and unrelated topic. It’s still a mystery as to why endometriosis happens….one explanation to it is that maybe you are born with it and it shows up a few years after your puberty. I was being treated for the thickness thing and not for endometriosis. So all that marriage and having kids will get you better works for the thickness and not for endometriosis apparently. All these years I was made to feel like I was asking the wrong questions or that I was just hysterical and what I have is normal.

It's been 3 years already since my endometriosis diagnosis came. That's how far I have come with living with endometriosis. I still remember how excited I was when I was diagnosed with endometriosis because after a lot of struggle I was finally diagnosed. You guys might be thinking what struggle is there in this...it's after all a diagnosis. It might be just a diagnosis for most of you reading this article today but in the world of endometriosis you almost give up by the time you get diagnosed because the blood works, MRI scans, all sort of tests that are there to prove that you have endometriosis come clean except the only option that you have left is getting a diagnostic laproscopy done to prove the doctor that your pain or you can call your symptoms story is fucking real. Most of the doctors think that it's all in your head or your are overthrowing or it's just a simple GI or gastric issue but when they open up your uterus that's when they realize that all this time the patient was indeed not faking her symptoms and sometimes even after all of this is done and still the meds they think should work and when they don't you have low pain tolerance and there's nothing majorly wrong with you and you are just a complaint freak and along with you the entire family of yours is mad but little do they know that how hard it is for the parents who were at a point so excited to have you in your life as their child have nothing but to swallow their tears seeing you in so much pain, little do they realize that the girl who had so many dreams of having that perfect career in a well known company earning a 6 figure salary, having a small but loving family where someone's calling her mom and someone's giving her that morning kiss on her cheek are all shattered in one moment when she realizes that she has gotten a bizarre illness in which she has no fault and it's just a default of the body but she is the one who's entire future has been ripped apart forcefully in front of her eyes.

On top of all this all those social media posts where there's an I SAID YES, I AM PREGNANT, 10 DAYS TO GO TO A BEAUTIFUL FOREVER AFTER etc every now and then present you the painful reality that you might never have any of these...none of the fairytale proposals or any of the photoshoots because even if you get better you reach a point where you are tired mentally and physically and just breathing and surviving is enough and none of the other things matter. Of course you are happy thinking that your friends are having all of these but then you are sad thinking of the harsh reality you are facing.

We live in a society where after 25 you are practically a 60 year old monk if you are not married. When people ask you when are you having your dream wedding you have practically no answer to that question or to the questions like why don't you shift to a bigger company and earn a better package. Then there's this Oh, so you will be staying with your parents even after they retire? Why can't you just stay somewhere else independently? Hey, shall I hook you up with a friend of mine....maybe you guys should meet and see if you hit it off? My answer to all of these questions is its my fucking life so I get to decide what I want to do at what point of time right?

Just because you are a certain age and just because someone's got married or having kids or buying a house or a car or going on overseas trips or staying at some 7 star hotel or eating out at a Starbucks daily doesn't mean you have to do exactly all of this stuff to show the world that see even I can afford to do all of these. Everyone's success meter differs, their goals differ, their timelines differ. So you just can't measure everyone's success on one single fucking scale. In this generation that's soo much social media savy and whose whole life revolves around it it's also important to feel happy from the inside doing things you love and not what others love.

So just coming back to my endometriosis story...yes I am not married or even close to getting married, yes I stay with my family and yes I am not dating anyone but you know what I am happy doing things I love and have always wanted to do. I am proud as to how far I have come in my life inspite of having such a soul crunching painful illness, I am happy about my own personal growth as an individual, about my own understanding about life and I am happy about stuff that I have already done in my life and that I am about to do. I might have taken life before endometriosis when i was normal for granted but then I don't think I regret anything that I did back then. All of this just made me stronger as an individual. Nothing scares me more than having to live with endometriosis and not being able to get rid of it.

You know people out there they take being able to wake pain free and go to bed pain free, being able to go out and enjoy with friends, being able to just watch a movie in a theater with popcorn, being able to go on dates, being able to experience the joy of a life growing inside you, being able to go to office and meet their colleagues, being able to go to shopping or trips or long drives or train rides or whatever that is considered to be normal for granted but little do they realize that even simple things like these can be a luxury for people like me who have to struggle to even get out of bed without feeling any pain.

I have seen many shades of life...the beautiful ones, the not so cool ones, the moderate ones, the mixed shades...just all of it and I still keep wondering if there's any other shade that is yet to be seen that might most probably be soothing to the eyes and beautiful and relaxing for once.

I know many will read and ignore it but I will still keep writing about endometriosis because someday someone might benefit from my articles and not avoid a painful period saying it's normal because I don't want another me out there who has to feel the pain of seeing her entire life turn into ashes right in front of her. In these 3 years I have heard doctors telling me that it's all in my mind or that I have some mental issue or that my pain tolerance was low or that I should get married and have a child which can possibly cure endometriosis but guys that's not true. Marriage or having sex or having a child has no connection with endometriosis. Most importantly painful periods aren't normal. There's possibly no cure for endometriosis and most like me end up having the pain 24*7 after a few months or years. This article isn't meant to blame any doctors, it's just a heartfelt confession to myself and to my fellow endometriosis survivors who still don't know what lies ahead of this dark tunnel for them. There’s this one surgery called excision surgery that is considered to be the gold standard of treatment for endo but you need to find the right doctor. I have already had mine and I am hoping it does work.

I wrote this blog mostly over the course of a couple of weeks mostly by intention because I wanted to document my journey over the last couple of days bit by bit. The last couple of days have been really hard with the pain almost wanting to kill me by making me breathless. I saw my entire life in a flash as if I was about to die...that's exactly how I felt everytime the intensity of my pain rose a 1000 fold mostly in the last few days. I felt this is it and maybe I won't be seeing tomorrow's sun. So I gave it a thought and realized that there's no use planning my life because when there's no guarantee whether you will be fine the next morning all of it feels pointless...so the best way out is to go unplanned and do stuff when out of those 365 days atleast 1 day turns out to be bright and sunny pain wise for and energy levels wise.

I didn't realize that I would even come this far with endometriosis but I guess I did and almost 4 years went by. I also saw most of my dreams and wishes slip by, aspirations slip by and a lot of other things but I also got a lot of stuff I didn't ask for like my ability to paint stuff and bring out my pain in the form of artwork, the ability to turn all the suffering and pain into words, reading tons of books and building my own library out of it, paragliding, the ability to feel loved by someone inspite of knowing that you have nothing to offer and still being able to feel the sense of security and belongingness and unconditional love even at such a hard and unwarranted phase of your life. Yes there are tons of people who never got and never will know what endometriosis is or even feel a fraction of your suffering but then there's that tiny fraction of those who instantly get what you are going through and they are pretty rare to find and even more rare to be with as friends or partners or parents etc. I feel lucky that I do have my own set of those rare people who educated themselves of endometriosis and tried to not judge me and instead accept me with endometriosis and the new me. I know my journey with pain and endometriosis might never really end and maybe my fight as well and I also know that I might never be able to fully accept it and maybe as long as I live with it I will always struggle to get up but maybe it's just how it is. You fight and u rise up just to wake up in pain for one more day and it goes on and along the line u do crazy stuff whenever you can and create a bagful of memories. Now these memories might not include the usual ones of getting a car or getting a house, dining at a 5 star hotel, getting married, having kids, buying branded stuff but it might include things like dancing at a bestie's wedding, wearing pretty clothes that still suit your body type, paragliding, horse riding, going on unplanned trips whenever the pain goes to sleep or doesn't go to sleep but you still can make it, having insta worthy food at insta worthy cafes, buying all kind of cringeworthy clothes after roaming around for hours at a zara sale or maybe watching a stand up show when you still can get out of the house, completing a year or so at work and finally getting recognized for your work inspite of endometriosis hitting you hard, making beautiful paintings, blogging about unusual stuff, reading all kinds of genres and building a cute library, decorating your new home the way you always wanted to etc. Now guys the moral of the story is God made me extra special and gave me an unconventional life to live. By the time I finished writing this blog I started feeling good because I wrote stuff that's my reality and which I always wanted to tell it to people and I didn't because simply the log kya kahenge thing hit me but now logon joh kehne hae kehlo because not you but I am living it and only I know how to live it not you.

I have spent years waiting to be heard since my 1st endometriosis diagnosis came but with every doctors appointment I felt even more less heard. I wasn't asking for much, just an average or rather basic quality of help....it's like u are crying in front of them and they are laughing at you like circus jokers and making fun of your pain.

You have low tolerance, you have to live with this pain and on top of that increase your self confidence and move on like you never had endometriosis, have painful sex because that's what you were made for.....find a husband and satisfy him and then try having a child with this debilitating pain...this is what I kept hearing everyday from the most learned and scientific people who exist...that's the doctors. In all of this where is that little bit humanity that makes you ask someone suffering in pain silently how are you doing? How are you dealing with this pain? No, instead of all this what I hear is keep taking the stupid hormonal pills which play games with your mood and hormones and your endo and just move on with your life, work somewhere, get married and have a couple of kids and yes how can I forgot the doctors and everyone telling me you need to learn to live with this pain. So I have one question for you and that is imagine you had something like endometriosis and your were made to live in some high intensity pain 24*7 how many days or months or years can you pull of living like this that too by sacrificing your career because well companies don't want to hire you because all they care about is profits and the one that you have right now you don't know how long you can stay put there, your clothes don't fit you because of the excessive bloating and with time your body with all the damage doesn't feel like your own anymore, you can't go out because hey the pain never forgot to leave your body, social life becomes 0 as a result, people don't want to date because Kitna hi koi jhelega staying with someone who is always unwell although it's not them but it's me that's in pain.

I get up in the morning and my battle with endo begins or I can say it never ends though because you are sleeping in pain and when your body can't take it anymore and you pass off...then there's the thing called work that you have to survive every day...although I like my work but it's hard surviving it every day but even then I get up and try, pain killers become your best friends because that's how you can survive the entire day and when you think the day is finally over the reality also kicks in that the pain is still there and you are still in battle mode since years. And on top of that when weekend comes its another doctors checkup or meeting a new doctor because let's see what he or she says and then coming home to cry a bucket full of tears because even this one considered you a mentally ill person with whom nothing is wrong. That one visit and that one line is enough to make you think of killing yourself right there. Have your ever felt ki abh woh time aa gaya hae when there's nothing left for you to live one more day?

I might have done paragliding, attended my best friend's wedding, bought stuff that too branded ones for myself, got tattooed but then at the end of the day what I am left with is just me and my endo pain that refuses to leave me ever.

It would be an earnest request to whoever is reading this don't treat endo like its nothing and just a mental disorder because it's none of these. It disrupts your mental health more than anything and yes the pain is real and I was unable to prove it to the doctors around me but I would say health professionals just please listen to people like us and not just brush it off saying it's a taboo and that your were born as a women and you have to increase your tolerance and move on because we can't no matter how hard we try it just doesn't happen. Put yourself in our shoes and think would you be able to carry out your advices on yourself if you had endo?

What people really want is gossip and I untentionally gave the people around me that much needed gossip. Fake sympathy, taunts, narrow minded thinking and getting reminded everyday that it was your fault when it actually never was because health issues come unannounced and when a women gets it that too a gynecological one all she gets is taunts, reminders everyday that it was all her fault and that how she will never get a partner because men apparently don't want a broken piece like me. What people don't get is all these taunts diminish you infront of yourself, your confidence crashes down and there's a lot of self doubt. They forget that somewhere deep down all your dreams are getting shattered bit by bit everyday. When you can't understand someone's pain you shouldn't atleast make it worse by opening your dirty mouth and plus society should stop objectifying women and feeding this thought into their brains that she can't do it without a male presence in her life and she needs a husband to become fulfilled and successful.

The most important thing no one tells you is with endometriosis it's easier to fall in love but it's difficult when you don't get accepted because of your pain and illness and the guys see you like you know as a burden or risk that's not worth taking. You can always fall in love but you can't tell the person about it because yea endo is kinda your permanent husband here. Seeing your friends getting married is definitely somewhat hard for people like me because you had this dream of a wedding and now you have to hide it from yourself because hell yeah endometriosis happened. So yes falling in love is easy but not being Able to feel it with the person is just tragic.

Then there's the holidays that seem soo off to me because everyone's just posting pictures of where they went and what they did and I have nothing to do. The house feels like it's chasing me. Every nook and corner has those painful memories of your endometriosis suffering, days that u cried on that I don't even want to look at. I feel like running away from my own house during weekends and holidays even if I don't feel like going out. Endometriosis is one such thing in which there's soo much of this mind vs body struggle that's constantly going on. Body says give up and mind says you seriously can't do that with yourself but what else can you do that no one tells us. No one addresses how much of a mental struggle endometriosis is, no one addresses the mental state of the person going through it because this disease doesn't let you live a normal life and you are constantly doing stuff to deny that. People tell you to be strong but can you even do that for years at a stretch?

Everyone needs a companion we hear that a lot and it's true somewhat but did we ever speak about what if we don't get it? What if some people have to live alone Maybe not by choice but maybe due to health issues or something else. The shiny social media posts address everything but not about what if someone's not having a partner or about loneliness or lack of companionship due to infinite reasons whatsoever.

We are always told as a child that too a girl child that we are Paraya Dhan, playing with Barbie dolls is what girls usually do...you can't ask for cars or anything because it's a boy thing and you don't want to be a boy because you need to get married and leave this house at some point but does anyone ever think what the plan should be when none of this happens? When your daughter isn't getting married or doesn't want to due to infinite reasons ( all of this doesn't include my parents because I was never treated anything less than a boy and they have and will always support me through my hard decisions. I think I became closer to my parents once I was diagnosed with endometriosis. Whenever I had this feeling or sadness that everyone is getting married and I am not I remember my mom telling me that it's not a compulsion for every girl to get married. You can choose otherwise and choose what you want to do with your life and instead become soo strong and independent that no one can dare to demean you in any way). Shaadi karna zaroori hae that's what you hear. I understand you need a partner and companionship after a certain point and it should be your choice and not a bucket list wish or something you want to tick off just like that. A girl shouldn't be made to feel like she is a burden on her parents because she isn't getting married. I understand the point that our parents want someone to take care of us when they aren't there to but that alone shouldn't govern the choice or decision to get married and it should be more like let the girl choose. I know many might not agree on it but its time the tables turn in our favor. Our society is sick when it comes to girls mostly but even boys in a number of ways and you can't change everyones mind but you should be able to changes the minds of those that matter to you at the very least. Sometimes heaven doesn't ordain a companion for us. Some of us are meant to travel alone. Our happiness is not defined in coming together but in letting go. Maybe we need to love ourselves before we can love another or maybe we are destined to live in hope. Either way, no feeling is final. And once we realize that we learn to cherish what we have. We remember to hold the magic close, to embrace the fleeting moments that tell us we belong, moments when we feel joy. When we know free, when we have a friend who sees our need and then, just like a shimmering firefly that flashes its light and disappears into the darkness we have our one taste of heaven and its worth a lifetime.

Endometriosis is difficult to live with because physically everyday is not less than a World War...you get up in pain and then you go back to bed in pain. In between you have your daily life slowly going into the trash can. You do whatever to get up the next day. All you hear is you need to live with the pain forever because there's no cure.

I do crazy stuff like getting a tattoo, signing up a paragliding form not knowing whether you will survive that, getting your hair colored in funky unexpected colors, shopping, having lunch at a 5 star, buying electronics, buying branded stuff, going out to see cafes and getting clicked, ordering books, painting stuff and seeing how the outcome is, maybe some good web series that gets you hooked and that in result helps me or maybe gives the strength to wake up the next morning..it's a daily struggle between your mind and body, between wanting to die or give up and wanting to survive for the next day. It goes on and on without an expiry date and then all you get to hear is you are over reacting about the pain which I honestly am not and you get tired making doctors believe that it's real because Endometriosis is an invisible disease that doesn't show up on any test results except a laproscopy because they are microscopic tissues. Your parents suffer seeing their only child going through hell everyday. Endometriosis Healthcare anywhere is shit mostly not because of the treatment line but because how the patients are treated and how much mental trauma they go through because the doctors don't want to listen to you. Not everyone is the same though..

Some of us are meant to travel alone in this journey called life. Not everyone gets a family or a husband or kids or even a successful career. When I see the I Said Yes or I am getting married or it's finally happening or I am pregnant posts of my friends on insta yes I do get sad for a moment because I might or might not get to experience any of this because of what I have but then I also do know that travelling alone might seem a bit off and complicated and challenging but then it's not that bad even...you do stuff you love and the only person there to cheer you would be yourself at that moment and then of course there's friends and parents. Until and unless you love yourself and get comfortable in your skin no one else will.

This is the condition of women's health care even in a well known hospital where behind closed rooms all the doctor is interested in is about your marital status and how many children you have. They don't want to know what all you have achieved, whether you are independent, whether you are happy...these are the least of their troubles. No matter how advanced we become a women's existence always seems to boil down to her fertility and children and husband. I tried changing that sort of thinking for a while but now I don't seem to care because you can't do anything about it. Even the highly qualified ones keep the same thinking. Yes people who actually carry about a women's happiness are rare like my dad and a couple of male friends of mine but then the most important topic of discussion in every clinic or hospital has been mostly about my fertility and not about my treatment line. But then there are some doctors in this field who actually go above and beyond to help you get a normal life. It’s just that it’s rare to find them. For years I have been waiting for the right doctor who would listen to me and I think I have finally found him.