Living With Endometriosis
Getting back to writing after going on an unprecedented break feels like taking a cold shower after a long, hot, sweaty day; refreshing. I last wrote before the protests in Kenya. Many times, I thought of getting back to this, just to document what was going on. But the emotions were so overwhelming. If you are not aware about what was going on, the short of the long is that Kenya’s politicians are crazy and the president is an even madder man. There is no combination of polite words to describe a group of intellectually inept elite politicians plunging an entire country into dysfunction, neither is there grace for them. I pray for their time to end quickly. I could go on, but that is not why we are here today.
Apart from protesting, much has been going on and part of that for me has been living with the endometriosis diagnosis. I have lived with this condition literally my entire life so it is not new to me. However, there is something about putting a word to a condition that makes it easier to manage and explain. I recently attended a book launch where I was reminded of the importance of sharing my story. We can never have a shortage of stories because there as many varied experiences as there are people. In this article, I will be sharing my experience with endometriosis from pre-diagnosis to post where I’m now doing management. Please note that I am not a medical professional. I am just a girl sharing her experience to shed light on what living with endometriosis is like.
Before Diagnosis
As a teenager, I really suffered. I didn’t know then but now I know a girl was going through it. I remember how the school matron would take any girl’s pain, who complained of intense cramps, as a trick to get a going home slip. For context, I went to a boarding school for my high school studies. I do not blame her much because women’s pain is usually taken as a joke or worse, as a rule, not an exception and this conditioning starts right in your teenage years. As a woman, pain is part of your being and you should be able to withstand as much as possible, because God forbid you cannot ignore cramping pain, what happens when you need to bring forth a child? Surely, you must learn early to be strong, emotionally, physically and mentally.
That is the story of literally every girl I know now who suffers from Polycystic Ovarian Symptom(PCOS), adenomyosis, endometriosis and a horde of other reproductive health issues. Did you know that women in pain are much more likely to receive prescriptions for sedatives when they complain of chronic pain instead of actual painkillers? Further, the wait time in emergency situations for women is 65 minutes compared to men’s 49 minutes. That is 16 minutes more in agony, 16 minutes that could literally kill someone.
I remember the countless times I heard, “Well, you just need to exercise a bit more and it’ll be okay” or , “This pain will go away when you have children.” No one asked me whether I worked out or whether I wanted to have children in the first place. And why, pray tell, would anyone tell a teenager that the only solution to their issue would be to have children? Intrusive thoughts get the best of me, but anyway. I remember discovering that painkillers worked for me, but only when I took them in large volumes, so I got on a painkiller experimentation journey.
Anyone who knows me knows I walk around with a blister pack of Ibuprofen or Diclofenac. I used to be those girls who walk around with a whole pharmacy just incase I started experiencing pain out of nowhere. On a day when the universe would get on it’s umpteenth attempt to unalive me, I would take 6–8 tablets of 400mg Ibuprofen. To contextualise this, one should not go over 1200mg in a day, so obviously I was overdosing and when it wouldn’t work, I’d throw in a Ponstan Forte that would also try to kill me with acute cramps before it actually worked. It got so bad that I was once diagnosed with hyperacidity and I didn’t know why till I walked into my now gynae’s office. You’d think that this was just an isolated situation but I did it because I knew about 5 other girls who did this like it was normal, because we didn’t have any other choice. Later, I’ll talk about why choice is important, but let’s get into how I got the diagnosis.
The Diagnosis
To see a gynaecologist in Nairobi, you need at least Kshs. 3500. Obviously as I was starting out in my career, I didn’t have that kind of money to spare. Nonetheless, I made a promise to myself that if I came upon some disposable income, or relief of some kind, I’d go see a gyna. So when I got a job whose benefits included insurance I finally went in for my first check-up. Within 10 minutes of telling the gynae my history and experience, they said I might have endometriosis, which I’d suspected for long. They added that they wouldn’t come to a conclusion before running tests and after they did, the doctor made her conclusion. Just to make sure the diagnosis was correct, she said that if my symptoms improved after a month of being on the medication, then that would prove her right. She was and I was relieved because finally I had a name for this condition.
That one day’s visit to the doctor costed me about Kshs. 15,000. It covered consultation, tests and one month’s medication. Here’s where it gets funnier; I needed to be on this medication for 6 months. By the time I’d be done, I’d have spent about Kshs. 40,000–45,000. It gets worse because in certain circumstances, insurance does not cover endometriosis medication. It gets even worser because as the protests happened and the government kept imposing taxes on a number of things, endometriosis medication got a bit more expensive. I hate the Kenyan government for very deep personal reasons and no one can convince me that there’s an ounce of good they are doing. Anyway, back to it.
For the time I was on the medication, my symptoms generally improved and I couldn’t believe how good other girlies were truly having it. If you’re a girl reading this and you do not experience any abdominal pain during your period, please thank the heavens twice every waking morning. That sweet, painless and symptomless period didn’t last long because one thing about hormonal medication; it WILL fuck you up. I was on two types of medication, a non-hormonal menstrual modulator and Visanne, the progestin -based and main course of treatment used for management of endometriosis. I used the word “management” because newsflash, endometriosis has no cure. So when the doctor took me off the modulator, I started experiencing very strange side effects. It was everything from nausea, fatigue, mood swings, joint pains, intense insomnia, depression, acne breakouts, suicidal thoughts, weight gain and even brain fog. Do you know how embarrassing brain fog is? You could start off a sentence and forget what you were saying midway. These side effects stayed with me for the last 2 months I was on medication and I remember looking for a second opinion and even begging my doctor to take me off them. None of that was possible.
Remember when I said I’d come back to choice? With endometriosis you have very limited choice. From the medication you take, to the options you have. Remember those kids some people said I could have to lessen the pain? It is harder to have children with endometriosis; it is possible but the process is high risk. Some doctors will tell you that to properly diagnose endo, you need a laparoscopy. How many women do you think, can afford it? What happens to those who don’t even have access to hospitals let alone a gynae? Reproductive health for women in Kenya is quite literally a nightmare; from being gaslit that your pain is unreal, to being given medication that doesn’t work to late diagnosis that places women’s health at a risk.
Post Diagnosis
The only way I have been able to survive thus far is because I have flexible work hours, insurance, a supportive partner and friends who deeply care about me. It is through their validation that I was able to see a doctor before it got worse. This journey is far from over for me because I need to be on a long-term pain management solution, which I will get sometime in November once my drug break is over.
It is still taking me a while to get used to this diagnosis. During my last visit to the gynae, I remember trying to gaslight myself out of endo by asking things like, “what really is the threshold of pain and why does it always seem like other people have it so bad?” This was coming from someone who was used to suppressing their pain because she was told it wasn’t really as bad as she put it. If you ask me how I’ve done things these past years, it’s because of sheer defiance. I also now know that this kind of pain and suffering is not normal, and I feel like other girls need to know this too.
Menstrual pain that makes you writhe in pain every cycle and drives you to tears is NOT normal. Children are NOT a cure for endometriosis. Any menstrual pain that stands in the way of your normal living, be it work or just getting out of bed is NOT normal. If you’re a girl whose pain has been invalidated time and again, I am so sorry. You are not imagining it and in fact, 1 in 10 girls globally is living with endometriosis. We have a long way to go first in recognizing women’s pain as valid and then finding solutions for it.
My unpopular opinion is that if this were a men’s issue, we would have already found a solution for it because their pain, no matter how minute, is taken more seriously. I digress. I hope sharing my experience validates any girl out there who might be suffering from chronic pain caused by endometriosis and I hope that if you’re a man with siblings or a partner who is always complaining about cramps, you take them a bit more seriously and see how best to be there for them.
Lastly, as we advocate for Universal Health Coverage, I look forward to the day when issues affecting women’s reproductive health such as endometriosis are included in insurance and given utmost attention. 1 in 10 girls is far too many for us to not call it a problem.
