Everybody knows about diabetes. It affects 180 million women around the world. That number is the combined population of Germany, Spain and the UK, which is funny, given that there is another disease that affects the same number of people, a disease that takes 7-10 years to diagnose. The disease is extremely painful and is the number one cause of infertility in women. I’m talking about endometriosis. I have been suffering from this since eternity.
When people ask me why I disappear every month for such a “normal thing” (they mean my period), 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 alive with every passing month. From not being able to walk for almost seven days and crying like someone bit you to having the pain even after 9 pain killers. Every other sneaky aunty’s solution to my not-so-visible problem is that the pain will go away after marriage. What they basically mean is have sex and you will be fine, which they can’t openly say because we remain a tabooed society. Guys, please grow up?
I myself never heard about endometriosis until I suffered through it myself. My primary symptom? Terrible stomach pain during periods. All the doctors I kept seeing told me the same thing, that there’s nothing wrong as far as they could see and it’s 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 a chocolate cyst is. Does it look like chocolate? Well, it has nothing to do with chocolate except for the fact that it’s dark in color. This cyst is a side effect of endometriosis.
When I started researching endometriosis, I found out that one in ten women have it. On top of that, it takes an average of nine years for patients to be diagnosed, and it can only be confirmed through invasive surgery (and the removed lesions must then be sent to pathology).
When doctors diagnose a patient early, it becomes easier to treat endometriosis and the patient can avoid significant organ damage. I wish there were specific tests that could detect the disease at an early stage that did not require surgery. Unfortunately, endometriosis is a complicated disease; symptoms vary from person to person, and many people still don’t know that the pain they’re experiencing could be endo. We need to raise awareness about 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 are not.
Let me tell you a story. Growing up, I was a happy kid. I was diagnosed with asthma in the sixth grade but that never stopped me from being normal. I got good grades. However, almost overnight, everything changed in my early 20s. I was suddenly side-lined each month by terrible pain when I started my period. This pain, it wasn’t the ‘take a painkiller, lie down, you will rest, you will feel better’ type of pain. It was the ‘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. The pain, he said, 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. So, what were my options? 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 lighter. Imagine balancing a full course load or a demanding full-time job when you are actually in so much pain that you can’t stand up straight.
Months passed and I developed more symptoms that I thought were unrelated, such as GI issues like nausea and bloating, as well as fatigue and 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, and endoscopies. You name the test and likely I had it. And everything came back normal. Seriously, it was pretty ridiculous. And none of my doctors expressed any concern. A doctor should be kind and caring, a professional who’s there for us, who we can depend on completely. You may find this kind of doctor if you have the common cold, or other more straightforward ailments. 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—this treatment is hard to come by.
And, more often than not, women are first offered painkillers for endometriosis symptoms. We’re regularly told that we are overreacting hypochondriacs, drug seekers, or the dreaded “hysterical.” Let’s talk about this phrase for a moment: the “hysterical female.” Hysteria was the first mental disorder attributed to women and only women. In the 5th century BC, Hippocrates was the first to attribute hysteria to a “wandering womb.” The idea was that the womb could move, causing pressure on other organs. Since then, this idea of “female hysteria” has persisted, and it’s not hard to see how gender bias may still 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, stay quiet about our pain, and apologize for our tears. So, it’s not hard to see how we may sometimes fail to push back against a doctor who’s dismissing us.
My own countless march through doctors’ offices continued. I went to a gynecologist my dad suggested. I listed my symptoms in what was, at this point, a rehearsed monotone. Only this time, an amazing thing happened. The doctor looked at me and said, “I think you have endometriosis.” Two years, countless doctors, countless tests, and large amounts of money later, it was the first time I heard the word. It’s outrageous, isn’t it? When my doctor finally mentioned endometriosis, I had this look on my face that showed how relieved I was that someone finally knew exactly what I was going through. My diagnosis came very late (10 years from the onset of symptoms) because my previous gynaecologist did not mention endometriosis.
My present doctor did start me on endometriosis medication, but after two months, when my pain became constant (24/7 instead of seven days of intense pain), she started questioning why the pain wasn’t going away.
She performed a laparoscopic surgery to find out the cause and the extent of damage. I most likely had stage 2 endometriosis and the disease had infiltrated my bowel. None of this showed up on imaging and none of it showed 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 two hoops that a woman must leap through. The first is this long delay to diagnosis; the second is finding effective treatment.
Effective surgery is very difficult to procure. Let’s consider an iceberg. Imagine this iceberg is endometriosis; some of the endometriosis is visible above water, but most of it is hidden below. There are two ways that a doctor can “treat” it: they can cut out the lesion entirely, or they can burn what they see. The vast majority of gynecologists burn the surface of the lesion, as in what they can see. This is called ablation surgery. Only a small handful of surgeons actually cut out the disease, which is called excision surgery. Right away, you can see the problem with option one, 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 common. I have had one surgery and will maybe have more in my future. Many women have more than that, and 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 that was causing me pain. It had spread to my colon and other areas.
When I saw my surgery scars, I did start hating my body for a while. Then I thought, what’s wrong with me? I still have my figure. The only thing new were the marks. The most beautiful thing about a woman’s body is that it changes, yet society makes us think we ought to look perfect. I am not perfect and I don’t even want to be. Now, in fact, I am in love with my body and its scars more than ever.
Now, when people ask me what I’d been experiencing, I do have proof. But I can’t answer the question “how are you?”. I can’t answer because my pain is still there, although it is getting better post surgery. 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 painkillers to birth control pills and more aggressive hormone-manipulating drugs. But most of them can cause a wide variety of pretty awful side effects—plus, none of them actually treat the disease. They only mask the symptoms.
A disease that affects an estimated one in ten reproductive-age girls and women means that an estimated 176 million people on the planet have endometriosis. Yet, we don’t really have answers on the etiological origins of the disease, which begs the question: Why? Why don’t we have answers? Why don’t we have better treatments with less 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, and fragmented care. If we don’t feel comfortable talking openly about our bodies and our periods, we won’t know if something is wrong.
Talking about a problem is the first step to changing it. We all have a responsibility here to be aware of the issues, the inaccuracies, and the biases when it comes to endometriosis. And ladies, it is especially our task to break the vicious cycle of misinformation, unwittingly passed down for generations by our mothers or grandmothers that “painful periods are normal.” “Part of being a woman” is not dealing with debilitating pain the way they did.
When it comes to your health, you have to be your own advocate and you have to be proactive. This goes for any disease, but it’s especially true for a disease that is so incredibly misunderstood. If you have a friend or someone you love experiencing 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 focused, and you can find the answers that you need. Yes, it’s a path that you can change for the better for future generations. We can all work towards a day when our daughters and countless others can have a painless future.
After graduating from a reputable university with a master’s degree in HR, Srinikhita Pole started working at an esteemed firm. With COVID disrupting our lives, Srinikhita discovered her hidden talents which included photography and passion for writing.
Editor's note: Would you like to contribute to EndoStories? Click here to learn how to submit your work.
*Patient stories submitted to EndoFound.org are the views of the patient and not necessarily those of the foundation. All testimonials are from real patients, and may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.