What Doctors Missed by Describing My Endometriosis Pain as 'Normal'
You know the feeling of being diagnosed with a disease that one in 10 women worldwide have but never having heard of it in your life?
If not, I can tell you that it sucks.
As someone who is heavily vocal on female issues, here I was listening to a doctor tell me that I have endometriosis. Endo what? Slowly, I learned I was not alone. For a disease that plagues so many women, it is astonishing how little awareness there is. The short definition of this disease is that it is a condition in which tissue similar to the lining of the uterus is found outside the uterus. For women with endometriosis, the blood and tissue shed outside the uterus during menstruation has no way of leaving the body, resulting in internal bleeding and inflammation which can cause a series of problems to follow.
For years I thought the pain was normal. Ridiculous when you think about it. Pain? Normal? I thought every girl was like me, experiencing brutally heavy and long periods, constant nausea and fatigue, back pain, bowel pain, drinking a drop of water and instantly needing to pee, and the list goes on. Since my early teens, I was told that’s “life for a girl” and it is nothing out of the ordinary. It was taboo to speak about it. Culturally, a girl’s reproductive health is uncomfortable for people to speak about – a reminder of how we haven’t evolved as much as we think we have. Doctors, the ones I entrusted and believed in, never took me seriously. “See how it is in the next few months and if it persists come back,” I would be told. I’d come back. Once again, the pain was “normal” and to them, I was over-exaggerating. Perhaps I was a hypochondriac. My pain tolerance may be too low, I was told. I had a few small cysts, sure, but that was normal. They would go away. We would keep an eye on it but it was “normal.”
That was a word I kept hearing and because of it, stopped caring for years. In the summer of 2016, I began caring once again. At first, I blamed myself for getting to the state I was in that summer. I told myself it was my fault I stopped going to the doctor. My fault I stopped following up. My fault I started ignoring pain and going on with my day. My fault for neglecting my health.
But it was not my fault. I was told I was “normal” and so I continued. Normally.
Needless to say, last summer I learned I had endometriosis (and a cyst approximately 10 cm in size chilling in my right ovary and another burst, no biggie) after my first laparoscopic surgery to remove my appendix, which didn’t even need to be removed but after all my other misdiagnoses through the years why not throw appendicitis in there. Ultimately, this was a blessing in disguise because that is when I learned after all those years my pain was in fact not normal. I was struggling in unbearable silence up until that very moment, feeling weak, confused and helpless. I was struggling thinking that I was small and weak because I couldn’t handle being a woman. I was struggling. Silently. Because pain is not normal. And I was told it was.
You know what the thing is with the pain? You don’t get used to it. I hoped after all the years I would. I’d get used to the pain. At my lowest, I hoped that maybe it would get so bad it would just go numb and I wouldn’t feel it anymore. That is when you know you hit your limit. When you just want to feel numb.
My diagnoses helped ease things. Not that it made the pain better. However, it was as if the puzzle started coming together. Every piece of research I found clicked more pieces together. I found the right doctors and started taking my health in better control. I stopped feeling weak and helpless and upset with myself. Instead, I started to feel strength. Understanding. Pride.
I was a freakin’ warrior.
I battled through the pain, the fatigue, the bladder and bowel discomfort, the mood swings. Oh, the pain. The crouching on the bathroom floor in tears until the pain went away so I could get out and continue on with the day so no one would know – not my friends, family, peers or colleagues. For years. That was “normal” and so I told no one, did nothing. Battled silently and got through every cycle. I felt like I was lazy because no matter how much I slept I was tired. I was always exhausted and justified that with my anemia. I took painkillers like candy and people that noticed it started judging me. Stop taking pills so much, they would say, it’s bad for you. You should only take it when you really need it, they would say. Little did they know I always needed it and in contrast to the pain, barely used it. The teachers that wouldn’t take it seriously when you would feel ill because of your period. The judgment of being too tired to go out, of canceling plans last minute or being late constantly, the persistent need to find a restroom, the random mood swings – sometimes that was worse than the physical pain. I battled.
I’m not alone.
One in 10 women. One in 10 who have no cure. That’s right – no cure. Let that sink in. If you’re thinking to yourself, “how could that be, I’ve never even heard of this disease,” you aren’t alone either. There’s such a lack of press and awareness on the disease and one comes to think why? Is it because of the societal taboo that comes with talking about these issues?
I remember first-hand coming back to my daily routines post-surgery last summer. My first surgery performed in August was easy to talk about. When people asked, I said I had my appendix removed, avoiding the topic of everything they found when they went in. My second surgery performed in September – not so much. Telling people I operated on my reproductive organs was different. Telling them it took an extra few weeks of sick leave because of postoperative pelvic complications made them squeamish. The words uterus and ovaries were uncomfortable. Not for me. For them. And they made it seem like their uneasiness speaking about the topic should shame me.
No. This was my battle. I am strong. I’m a fighter. I have nothing to be ashamed of.
But for many women with endo, it seems like we should be. Most men don’t get it – anything to do with lady bits made them feel awkward and some are downright cruel, acting as if this is just another thing women are whining about to play the “victim.” Seriously?! Other women, surprisingly, don’t always sympathize either. In their minds, they have periods too. They know what cramps are like so they sometimes struggle to imagine the higher intensity of endo pain. Then there are the people that would look at you and say things like, you’re too young to feel this way. That is probably my favorite. I’d look at them frustrated, shrug and think, thanks for your input, I’ll let my chronic illness know that I’m too young for it to do this to me.
It was difficult. As soon as I was diagnosed the first word to pop up during my google search of endometriosis was “infertility.” I wept. Suddenly, at 22 years old, I was suddenly told that something I joked about never wanting could be snatched away from me. I was heartbroken and I didn’t want to admit it. Many women with endometriosis are able to have a natural pregnancy but that doesn’t take away the potential implications.
I used to be fine with needles and giggled when people said they were afraid of them. Now? The sight of a needle makes me tense, and I look away with tears in my eyes at yet another vein being poked. I was told I have a higher risk of ovarian cancer. I was presented with different methods of treatment, none of which cured the disease. Temporary fixes from the birth control pill to an IUD to Lupron. Injections that induce menopause. At 22.
Every day I learned more. Every day I reached out to different women in different forums. Found books and videos and articles. That’s when you know you have a community of women with a chronic disease: you form some kind of online family. I knew this disease was now for me to take care of. It has no cure. It goes misdiagnosed. In fact, through other rough experiences of other tough ladies, I learned that often this disease is diagnosed by “accident.” In my case, supposed appendicitis. The research, the knowledge, the awareness – that is what would empower me. I fought my shame of speaking about such a taboo issue and decided I had to talk about it. I didn’t start talking freely about my endometriosis for pity, attention or sympathy. I don’t want any of it. I felt a duty to speak about it for the girls that don’t feel comfortable. The girls that struggle silently even after diagnoses from shame. To inform, explain, educate and spread awareness. To benefit research to one day find a cure. I now know what to go to doctors with. I now know what “normal” meant. The normal doctors and others told me I was going through. It wasn’t “normal” in the sense we are used to.
It was a different normal. I get abdominal pain that can flare up at any time. It’s exhausting. It’s the feeling of thorns growing in my pelvis, multiplying every month, wrapping around like vines. It affects me financially, mentally and physically. It affects my dreams, my desire to go back to school, my career aspirations. It affects my relationships and friendships. My family who watches me struggle. My work life. My quality of life. It’s poison affecting my organs, taking me prisoner at times and all I can do is fight. Fight like a girl. Because ladies, we are badass. We are strong. Tough.
It was my different normal. All cases of endo are different – I have spoken to women who have it but don’t feel it as drastically and others who had to quit their jobs and completely shut out from the world because of it. The stages (there are four) do not determine the pain. Most women, like myself, refuse to let this control our lives. We refuse to let it win. So we go on every day, doing everything in our power to attempt a sense of normalcy. People we interact with daily have no clue. They don’t see how distorted we look inside. How angry we are that our own body is betraying us. We put on a brave face and live as normally as possible. It’s a devastating disease, an invisible one, that requires respect, understanding, patience and support. When you tell people about your chronic illness, and they tell you that they looked it up online, you feel incredibly touched that another person cared enough to do so. You feel happy that at least one person learned about it – awareness is being spread.
It is my new normal.
A normal with endometriosis. A normal with more bad days than good. A normal where I do things at pain levels others refuse to leave the bed at because if I didn’t, I wouldn’t have a life. A normal where I’ll get up and crack jokes, laugh, dance and stuff my face. Where I’ll live my life. And it doesn’t always mean I’m having a good day. Rather it means that I was able to be stronger than the pain at that moment. Freakin’ warrior. Because this is not the flu. I won’t wake up one day and it’ll be better. But I’ll laugh it out. I’ll spread awareness and march for a cure. I’ll connect with my endo sisters. I’ll form relationships with people that are important enough that they will support me. I will live my normal.
A normal in which endometriosis does not defeat me.
This story originally appeared on Beyond Bossy.
Image via contributor