Looking At Endometriosis Through My Eyes

LIVING WITH AN INVISIBLE ILLNESS

Just because you can’t see it doesn’t mean it’s not there……

LOOKING AT ENDOMETRIOSIS THROUGH MY EYES

Everybody knows about diabetes. It affects 180 million women around the world. This is the same population and Germany, Spain, and the UK together but there is a mystery disease that affects the same number of people, a mystery disease that takes 9 years to diagnose that is extremely painful and that is the number one cause of infertility in women. I am talking about endometriosis. I have been suffering from this for eternity. When people ask me why I disappear every month for such a “NORMAL THING “here’s my answer to them. It’s not necessary for the pain to show on your face for people to actually believe that you are going through something that is eating you from inside with every passing month. From not being able to walk for almost 7 days to crying like someone bit you hard to having the pain even after 9 pain killers and what I face every month is beyond any scientific explanation that people give me. Every other sneaky auntie’s solution to my not so visible problem is after marriage it will all go. What they basically mean is have sex and you will be fine which they can’t openly say because we stay in a hypocritic society. Guys, please grow up?

I myself never heard about ENDOMETRIOSIS until I suffered through it myself. What we are really talking about is terrible stomach pain during periods. All the doctors I kept seeing told me the same thing that there’s nothing wrong as far as we can see and it’s just probably in my head. There was this one doctor who finally paid attention to my symptoms and said I might have a chocolate cyst. You might wonder what’s a chocolate cyst. Does it look like chocolate? Well, it has nothing to do with chocolate except the fact that it just resembles one. This cyst is a side effect of endometriosis.

When I started researching about endometriosis as a whole it was not only just me but surprisingly one in ten women might also have it. To keep it simple, endometriosis is a bit like cancer except that you don’t die from it. It’s a tissue that normally grows inside your uterus that starts to grow outside in this case and invades your abdominal organs. And another thing about endometriosis is that before periods when your egg starts fertilizing it gets destroyed into many infinite pieces and these pieces get stuck in your uterus and other parts like gum. Because of their tiny size, they go undiagnosed in scans. On top of that, it takes nine years to diagnose and it can only be done through traumatic surgery. Just imagine yourself being your patient. There is a 50% chance that the disease will come back after the surgery and if it does you will have to undergo five surgeries. In other words, you will never know when it will hit you. You might end up living in fear that it might come back and you might never know.

If we are able to diagnose early it becomes easier to treat it and significantly avoid organ damage. I feel there should be specific tests pertaining to detecting the disease at an early stage rather than directly going for surgery. Unfortunately, endometriosis is a complicated disease and it varies from person to person and because of this the diagnosis and follow-up for each and every woman need to be different. The tests and the technological tools available are great and we need them to change the paradigm of endometriosis but I am afraid that it’s not going to be enough. We also need to raise awareness of the disease so that women and doctors start paying attention to the early signs instead of ignoring them and thinking that painful periods are normal when in reality they actually aren’t.

It's a disease that directly or indirectly affects you. So, what’s this disease? Endometriosis. Endo…What? Exactly! This is almost everyone’s reaction I have spoken to about it. This can cause pain, organ dysfunction, internal bleeding and scarring. The reality of endometriosis is so much more than that. It's arguably the most common devastating disease on the planet that most people have never heard of. If you have heard of it, odds are that you don’t really know. Let me tell you a story. Growing up, I was a happy kid. I was diagnosed with Asthma in 6th Grade but that never stopped me from being normal. I got good grades. However, almost overnight when I was in my early 20s which I still am, everything changed. I was suddenly sidelined each month by terrible pain. When I started my period. Yes, I said period. No one freak out yet! This pain, it wasn’t like ‘take a pain killer, lie down, you will rest, you will feel better’ type of pain. It was ‘knock you off your feet, lying on the cold bathroom floor’ alternating between hot flashes and cold sweats type of pain.

Of course, I went to a good doctor who assured me in successive visits that this pain was normal. It was just a part of being a woman. Maybe my pain tolerance wasn’t very high or maybe I was just trying to get attention. First, let me just say that I was well aware of the many ways that I could attention and complaining about pain for my girl parts, it wasn’t one of them. So, what could I do? I managed as best as I could. I loaded up on painkillers for a few days each month and I continued on. I still do it. I scheduled exams and work around when I thought my symptoms would be worse. Imagine a full course load or a demanding full-time job when some days you are actually in so much pain and you can’t stand up straight. Months passed and I developed more symptoms that I thought were unrelated. GI symptoms like nausea, bloating, fatigue, migraines. I saw many doctors, world-renowned specialists at the best hospitals and they ordered a constant battery of tests of course: blood work, MRIs, CAT Scans, colonoscopies, endoscopies. You name the test and it’s most likely that I have had it. And everything came back normal. Seriously, it was pretty ridiculous. Isn’t this the image that we have in our mind of what a doctor’s visit should be like: a kind, caring doctor who’s there for us and we can depend on him/her completely? While this may be the case with things like the common cold, evidence suggests that when things are less clear-cut, and especially if they involve women’s health, it gets complicated quickly.

And, more often than not, women are offered sedatives first for the exact same symptoms. This isn’t new information from a woman with endometriosis, we are regularly told that we are overreacting or hypochondriacs, drug seekers, or the dreaded “hysterical”.

Let’s talk about this idea for a moment: the “hysterical female”. Hysteria was the first mental disorder attributed to women and only women. In 1900 BC, ancient Egyptians attributed hysteria to a “wandering womb”. Yes. Those silly wombs always running around causing problems. Since then, this idea of “female hysteria” has persisted, and it’s not hard to see how gender bias may play a role in medicine. From an early age we are taught certain social codes: be polite, wait your turn, ask nicely. We are taught to suppress our anger and apologize for our tears. So, it’s not hard to see how we may fail to push back sometimes against a doctor who’s dismissing us.

My own countless march through doctor’s offices continued. I went to a gynecologist my dad suggested. I went in and what by this time, was a rehearsed monotone, listed my symptoms, and then an amazing thing happened. The doctor looked at me and said, “I think you have endometriosis.” 2 years, countless doctor’s offices, countless tests, and large amounts of money later, it’s the first time I have heard the word. It’s outrageous, isn’t it? When my doctor finally caught it, I had this look on my face that said I am relieved that finally, someone knows what exactly I am going through. My diagnosis happened pretty late like I was almost a year late because my previous gynecologist couldn’t point it out.

There are many reasons why the average delay to diagnosis is 10 years. One of those reasons is that this disease is highly individual, different women have different symptoms, whereas one woman may have painful periods, another may have GI symptoms or urinary symptoms, or autoimmune symptoms, or maybe a combination of all those. The problem is that most doctors don’t know this. Of course, it’s not entirely their fault. Most doctors are good, well-meaning people trying to do a good job. The problem is what they are taught in medical schools is woefully outdated, and they practice within a medical system that is ill-equipped to deal with a disease that is highly individual, complicated, and involves different specialties, specialties that don’t traditionally communicate with one another. So, like many women, I was shuffled around from doctor’s office to doctor’s office, from specialist to specialist, without anyone actually putting the pieces together.

My present doctor did start my endometriosis meds but after 2 months when my pain became constant like 24*7 from just 7 days of intense pain even she started having doubts that why isn’t the pain going.

So, the doctor did operate to find out the cause and the extent of the damage. I had stage 2 endometriosis most probably. The disease had infiltrated my bowel. None of this showed up on imaging, none of it shows up on blood work. So, I had the surgery, and I was good as new. I was cured, right? Not so fast! With endometriosis, there are 2 vortexes that a woman has to go through. The first is this long delay to diagnosis, and the second is finding an effective treatment. For example, let’s consider endometriosis surgery; imagine an iceberg, imagine this iceberg is endometriosis. There are 2 ways that a doctor can treat it: can cut it out or burn what they see. The vast majority of the 52000 gynecologists burn the surface or burn what they see. That’s called ablation surgery. Only a small handful actually cut out the disease, which is called “excision surgery”. Right away, you can see the problem with option 1, right? If you burn only what you can see, you leave potentially 90% of the disease behind. It’s no small wonder that repeated surgery for endometriosis is a fact of life. I, myself have had 1 surgery and more maybe in my future. Many women have more than that, 7 to 10 isn’t uncommon.

So here I am 15 days after my laparoscopic surgery writing this article. Yes, I finally got proof that it was indeed endometriosis and the reason for it getting constant was that it has spread to my colon and other parts and made its home there.

Now when people ask me what happened I do have proof but the answer to the question “HOW ARE YOU?” I don’t have because my pain is still there and if you ask about the surgery pains they are getting better.

You may be asking, “isn’t there some type of drug for this?” Yes, doctors do prescribe a wide variety of drugs, from anti-inflammatories and pain killers to birth control pills to more aggressive hormone manipulating drugs. But, the problem with all of these is first, they can cause you to know, a wide variety of pretty awful side effects and secondly, none of them actually treat the disease. They only mask the symptoms. So, we have a lot of questions about this disease, not a lot of answers, but what do we know?

We know that the endocrine and the immune systems are involved. We know that if your mother or your sister has the disease, you have an increased risk. We know that environmental toxins may play a role. We know that 50% of all unexplained infertility cases and half of the 6 lakh hysterectomies performed each year are due to endometriosis. There’s a really important sidenote there; a lot of these hysterectomies for endometriosis are completely unwarranted. Hysterectomy is not a cure for endometriosis.

ACCEPTANCE AND HEALING

So, a disease that affects an estimated one in ten reproductive age girls and women, that’s an estimated 176 million people on the planet. If all of the people who had endometriosis formed their own country, it would be the 8th largest, larger than Japan, Mexico, even Russia. Yet, we don’t really have answers, which begs the question: Why? Why don’t we have answers? Why don’t we have better treatments with fewer side effects? Why hasn’t everyone heard of this disease? The answer to all of those questions lies in lack of awareness, gender bias, uninformed doctors, fragmented care. Below the waist issues are the last great women’s health taboo. You get the idea. The problem with all of this is that if we don’t feel comfortable talking openly about our bodies, our periods, we won’t know if something is wrong.

Talking about a problem is the first step to changing it. After all, isn’t something wrong in society when we still see blue liquid in the commercials? For those of you who were asleep in health class, that is not accurate. We all have a responsibility here to be aware of the issues, the inaccuracies, the biases. And ladies, it is especially on us, to be aware and to break the vicious cycle of misinformation, unwittingly passed down for generations by our mothers or grandmothers that “painful periods are normal”, and “part of being a woman” and we just you know need to deal with it as they did.

When all strategies and options exhaust the reality starts hitting you hard and that too is not in a good way. When you start realizing that this is your new life and that things have changed and there’s a chronic illness that is here to stay you feel like running away so badly that you can do anything for it. When I was diagnosed with Endometriosis in July my real journey with the illness started. Till then I knew I had something but I was being told by doctors and people that it’s all in my mind. The diagnosis somewhat made me happy because now my problem had an actual name to it. Things started getting worse pretty much after that. Endometriosis was just a monthly guest in my body for 6 days till then but now it’s a lifetime guest who challenges me day in and day out.

Right after my diagnosis pain started getting worse and my doctor ordered an MRI scan but unfortunately, nothing came up. The head of radiology who did my MRI suggested my dad to get me married because I was absolutely fine according to the scan. I had never felt this helpless in my entire life. That day along with the helplessness a part of me that believed in the word “HOPE” got lost somewhere. I went to that scan in a bent condition like a 90-year-old person unable to walk and on top of that the doctors ran a USG scan on me without water. That pain that I felt that day was beyond any explanation.

Tests continued and so did the meds. As a result, my face is filled with ACNE and I have lost more than HALF OF MY HAIR. I was losing and gaining weight at the same time. I hated my body for a really long time for what it is now. My hair, face nothing felt like a part of me. Everything seemed alien. The struggle between my inner conscience and my medical condition seemed like a long-lost battle where hopes of winning were close to NIL.

There was a point when even my present gynecologist started doubting my condition because meds weren’t working and the pain was increasing day by day. It was then that she decided to go for a laparoscopy to find out what’s the root cause. The panel of doctors conducting my surgery were against it because I was YOUNG and UNMARRIED. So, I was sent to a gastro doctor just 2 days before my surgery to rule out all causes and my life felt like a comedy show at that time.

Finally, the surgery did happen. After my surgery when I saw my surgery scars, I did start hating my body for a while but then I realised that what’s wrong with me? I still have my figure. The only thing new were the marks. You know the most beautiful thing about a women’s body is it keeps changing and society makes us believe that we ought to be perfect with 0 fat in order to be accepted but do I care? No, I don’t. I am not perfect and I don’t even want to be. Now in fact I am more in love with my body and its scars more than ever.

Now coming back to the surgery let me tell you that the surgery did spill out all the beans revealing that it indeed was endometriosis and damage was way too much. My uterus was like a vessel with too many holes in it according to the doctor. And yet again I was suggested by senior doctors and gynecologists that getting married and having kids can save me. See that’s where the entire problem lies. Our society forces everyone to think in a certain way that even the most learned people give you the most disgusting solutions.

Just days after my surgery there it was again. The pain came back and this time with more intensity. That’s when I lost whatever mental balance was left inside me. My life seemed like a dark tunnel with no light at the end of it. My parents suggested that I should try therapy and see if it helps. Saying that Dr. Anisha Khanna came like an angel into my life would look like a Bollywood film dialogue but yaar sach hai. Life before her and after her has been way different. People say therapy is bullshit where people listen and give some lame suggestions but that’s not what it is. Listening, trust me many of us can’t do because listening to someone else’s issues patiently without being judgemental is a different kind of art.

When I started my therapy, I was this depressed lonely person who didn’t know what else was left in my life. I didn’t have any sense of direction. Getting up out of bed seemed useless. Meeting people that I loved the most became what I started hating the most. With doctors and specialists telling me this would never go and that endometriosis is a part of me now started killing all my hopes of a better future. I was never this person who needed therapy. I am glad that I took the first step towards emotional healing. Talking and sharing my pain without being told to get married or have kids was exactly what I needed the most.

Now I am preparing for and giving government exams. Let me tell you one thing. I hated government jobs my entire life in spite of the fact that my dad is one of them. I always loved the challenging atmosphere of an IT firm. With endometriosis becoming my new friend I started realizing that there’s no point in pushing myself into something which will increase my stress levels which in turn can increase my pain. That’s when I started giving government jobs a serious thought. I realized that it wasn’t that bad too.

I have given 2 exams and I fucked them up because my pain went off-limits during the exam and I just couldn’t do it. You know what I am more adamant than my illness. I definitely am not giving up until I am getting the tag of A GOVERNMENT OFFICER but without compromising my health. I have started exercising and walking now. Yes, it pains but it doesn’t affect me that much mentally.

When it comes to your health, you have to be your own advocate, you have to be proactive and this goes for any disease, but especially true for a disease that is so incredibly misunderstood. If you have a friend or someone you love having these symptoms, don’t dismiss them, believe them, support them, and help them find answers. If you are having these symptoms, and no one is listening, but you know something is wrong, don’t stop pushing. You know your own body, be brave, be persistent, be focussed, and you can find the answers that you need. Yes, it’s a path that can be changed for the better by you for the future generations by joining together, standing up, and speaking up openly about our bodies, our pain, pour periods, our symptoms. We can all work towards a day when our daughters and countless others can have a painless healthier future.