Health / Memoirs

My Struggle with Endometriosis

I am in the advance stage of Endometriosis. “Endo what?“, you might ask. For those who have never heard of this condition, let me try my best to explain it in my own words. Please note that I am not a doctor, so don’t get pissy if I don’t get some medical terms right.

It is when the menstrual tissues in your body grow outside of the womb and on the other reproductive organs. The blood that gets trapped in the body will have no way of coming out and form into cysts. This causes severe pain around the abdomen and back during, before and after your period. Sounds excruciating doesn’t it? That isn’t all. Endometriosis also causes your fallopian tubes to be blocked due to scaring depending on the extent of the condition. And when one or both of your tubes are blocked, the chances of conceiving are very slim.

Now you’ll probably have a string of questions.

I will share with you as much as I know based on experience. It is not known what causes endometriosis. It is hormone related. Some women have it while some don’t, its like gambling, there isn’t any way to stop it from hitting you. The main symptoms are severe pain around the time of your period. And I’m talking severe. Like – paralysed, unable to move, as if you’ve just been stabbed and breaking out in cold sweat – kind of pain. So pain that it deters you from going about normal daily chores.

Omg, that sounds like me, so does that mean I have endometriosis?“. It is better to get yourself checked by a doctor if you suffer from excruciating period pains.

So you have endometriosis, what is the cure? Ladies and gentlemen, I regret to inform you that there is no cure. Yes, you heard it right – NO cure. Zilch. Zero. None. Nada. Meaning that I will continuously bleed from the outside of my womb and grow cysts in my abdomen… for the rest of my life. These cysts can grow so big that it can explode inside your body and you will only be able to remove it by surgery. The only way to prevent the cyst from growing into a dangerous size is to take birth control pills or (a very expensive) jab to stop you from having your period. From having killer cramps before, during and after every cycle to no periods at all sounds like heaven right? Wrong. You’ll still have to deal with the side effects of taking the pills and your raging menopausal-like hormones will wear you down.

There is however, one cure. Well, sort of because it isn’t guaranteed. The cure… is to get pregnant. Yes, cure in italics because while most women don’t get cysts anymore after conceiving, some still suffer from them but not to the extent of how it was like before pregnancy. Hence, you’ll still need to go back for follow-up check ups.

Huh??? Wait a minute. How am I suppose to get pregnant when my tubes are blocked?“. You can but not naturally.

I have just receive the news on my last appointment that I will have to go through In-Vitro Fertilization better known as IVF to conceive. I don’t know how I feel about it; not surprised but to have it confirmed is just… wow. So I’m really in the ‘exclusive’ barren women’s club. My doctors have been monitoring my condition since my second operation in 2014. It was a major one as the cysts in me grew to be about 8cm – 10cm each. They got so huge because I failed to go for follow-up check ups after the first operation I underwent in 2010 due to financial difficulties and my previous relationship was enough to kill me. I know, all that shouldn’t have been an excuse but what is done is done. I regret that I allowed that terrible relationship dictate my health but its a lesson I’ve learned the hard way.

So since I’ve had two operations in a span of 4years, it is obviously best that I prevent from having any more surgeries hence, I am taking birth control pills everyday without alternating till we’re married. We’ll prepare for the IVF tests as soon as we sign our marriage documents as its under Singapore’s law to go through IVF only when you’re legally married. But before IVF can take place, they’ll need to check my egg count. And if my egg count is fine, we’ll be able to proceed but success is not guaranteed.

I feel bumped out because the IVF process is a very expensive one. As it is, my surgery, the jabs, the ongoing check ups and constant medication is a lot of money spent. I may look like a gold-digger  (according to some people) but in fact, I am quite frugal. I know my health is the last thing I should be scrimping on but the money is just one reason why I feel this way. I look at people with five young children causing a ruckus in public and teenage mothers holding their babies and wonder, why me? These women pop children out without batting an eyelash while I’m here spending thousands to keep my insides from exploding and to conceive.

I don’t cry over it now, not as broken about it as I use to be. As a girl growing up, you’ve always had the idealistic dreams that someday you’ll be married and have children of your own. I would play masak-masak in my makeshift kitchen and push my doll in a little stroller whenever my mother brought me to the market. It didn’t dawn on me that I’ll have a problem.

I was a late bloomer, I got my period at 14 and it didn’t come back till almost a year later. Then, at 15, I had more regular but painful periods. And I mean painful. I would get cramps so terrible that I couldn’t get up to go to school, it was like my insides were being stabbed,  twisted and pulled. As I got older, it just got more and more excruciating. Coming into my mid twenties, things took a toll for the worst. I would get these painful stabbing cramps during, after and before my period and can go on for 3 weeks straight. They’ll be so painful that whenever it hits me, I’ll black out within seconds because my body just couldn’t take the pain. So I avoid that by staying at home, taking painkillers and sweat it out till I feel better.

One day, it hit me while I was at work. It got so bad I couldn’t get up and could only curl up on my sides on the floor till I had to be held up. I went to the nearest hospital because the pain was too much. That was when, after a few days stay in hospital, several scans, a surgery and after 25 years of living on earth that I was diagnosed with endometriosis. The news was delivered to me on my birthday that year and was told that I may not be able to conceive. I was devastated for months after. I couldn’t stand the sight of pregnant women, babies made me cry and looking at happy families just made me wanna throw up. I couldn’t bring myself to go for follow-up checks because it just reminded me of my emotional pain. I was more affected psychologically than physically and stopped taking medications altogether because my periods stopped being painful and frankly, I couldn’t afford the pills.

It took me some time before I got over it and completely stopped being angry at God and the universe. So what if I couldn’t have children and if no man would marry me? I planned to travel the world, live in a nice little apartment, adopt a dog and enjoy my life. I drilled it into my mind set that I will be okay as a single woman. Along the way, I did meet men but I did not intend to pursue anything further in fear that my condition will affect how I’ll be treated – like just a piece of meat. Not long later, I met a guy who slowly became my friend and I was comfortable enough to tell him what was really wrong with me. We became an item after what seemed like the longest time but I still didn’t think we would pursue a future together.

I was eating cheese sticks and watching CSI in my rented room one afternoon when a terrible stabbing pain pierced through my abs. I dropped everything, fainted for a split second and woke up feeling cold and paralysed. It was a familiar pain but magnified and one I had not felt in a long while. I thought I was going to die. I grabbed my phone to call my roommate and the next thing I can remember was my landlord trying to comfort me and the ambulance coming to take me.

The doctors suspected that my colon intestine was ruptured but instead there was something so huge growing inside me that it was pressing against my organs. It turn out that the cysts have made a silent but volatile comeback this time. I went for a second surgery to remove the cysts. After the surgery, because I was living alone at the time, I was greeted by a social worker and a handful of very kind nurses to stand by me in case I went into a meltdown but I was fully prepared to hear that I was completely infertile. Instead they told me that I am required to get pregnant to stop the cysts from growing again but I will need assistance conceiving. Well, not the right emotion but I was pleasantly surprise. So there’s still hope and I’m not completely barren. But I must strictly go for follow-up checks and religiously take my medications for my own good whether or not I can have children unless I want to grow a cyst farm inside of my body.

Two years since my second surgery, I’m now going for my follow-up checks regularly, take my medications strictly, have no more periods but replaced with bouts of hot flashes and mood swings and have been told that the years of endometriosis attacks have left my tubes scarred and blocked. My only chance at a sort of cure is through pregnancy through IVF. Maybe it’ll be successful? Maybe it won’t? I leave it to God to decide that path. But whatever the outcome, He has blessed me with a man who has been patient through my painful progress, who loves and accepts me despite all my short-comings and will hold my hand through the rest of our lives together. I almost did not meet this kind and loving man. “Besides…“, he said, “… we can always adopt children, we will love them regardless“. Sometimes in life, it is easier to see the bad that is in front of you, you overlook the good.

I know that this is a long and emotional post but I feel its crucial that I put it out here because I want my fellow sisters with endometriosis to know that it is not shameful and that you are not alone in this. As for the IVF, I will update you ladies again if Shine and I are suitable to go through with it after our wedding next year. Till then, I hope you ladies stay strong, never loose hope and continue fighting. Lots of love to you beautiful people.

3 thoughts on “My Struggle with Endometriosis

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