Why so many of us dont want to talk about Endometriosis
I really hesitated in writing this article for fear that there might be backlash. But I have discovered recently that the more I am honest with my posts, the more people are speaking out. So with the risk of making some of you angry, the trade off is to make more of you feel less alone.
When I finally reached out on social media I found that nobody – with the exception of a few powerful endosisters who have found their way – were not keen on commenting on posts or making themselves obvious sufferers of the disease. This corroborates the sentiment of several endometriosis R&D companies who say they feel lack of support from endometriosis patients as we dont stand up and fight for the cause. Instead, we as patients evidently become quite defensive about new drugs and gimmicky solutions that ‘may’ help our pain or furthermore, ‘cure’ our endometriosis. But it cant be because of periods. For Christ Sake the IBD community is VERY vocal and you cant get us to shut up about poop talk. What sets us apart?
When I was 14 I was loosely diagnosed with a disease called endometriosis – a disease which would cause ‘heavy and painful periods’. I was an anomaly as I later found out, because here are the lame stats that go along with the disease:
The average diagnosis takes about eight to 10 years. During that time, women typically go through seven to 10 doctors. Yet, endometriosis is quite common. An estimated one in 10 women have endometriosis. That’s an estimated 176 million women worldwide. – Danielle d’Entremont, CBC radio interview
No other disease that I know of comes with a statistic of failure to diagnose, unheard cries for help, and years of life altering pain; permanent damage to the body and the ego. While I continued the journey of “heavy and painful periods” from my teens into my 20s, I came to realize why women dont like to speak out about this disease, despite the 1 in 10. In order to explain, I will use my own story.
I was 27 years old, married, with a house and two dogs – a good life. My husband at the time was a chef, and I was home alone most of the time. What I wanted more in life, unknowing of its challenges, was a baby. I wanted to be pregnant, I wanted to raise this child and I wanted what every woman was supposed to want – a family. We tried, and tried, … and tried. Looking back I should have bought pregnancy tests in bulk. Failed month after month made me skeptical of why this could be happening. We werent old, we didnt do drugs, we werent sick. I spoke with my family doctor who told me that it could be a number of things preventing me from getting pregnant but that the only way I could get proper care was to have 2 years of failed pregnancy as a trigger to refer me to a fertility doctor. I did what any woman would do – I lied. While it had only been shy of a year since we had started trying to get pregnant I told the doctor it had been well over two years. That was that, papers were signed and I waited to see the specialist. The first appointment with the fertility doctor was on my own (as most things were back then but thats a whole other story). We looked at blood work, habits, body weight, etc. The second visit was with my husband, then a follow up to let him know his swimmers were in good condition. He was off the hook. Which meant more focus on me. An internal untrasound revealed that I had very low egg count, and one blocked Fallopian tube. If any of you haven’t had the ‘champagne’ before, its a procure where they stick a needle along the inside of your Fallopian tube and push through it a bubbly fluid that should leak through the other end if the tube is functioning. Mine… was blocked. How do they unblock it you ask? They push the fluid through at a higher rate and hope it dislodges whatever the f%&k is blocking it. I cried like a child! Despite this quick fix, months went by without getting pregnant and the doctor finally pulled the trigger on doing a laporascopic surgery to determine and remove the endometriosis. In this case they book the OR for 1 full hour so that if any endometrial tissue is there, they remove it at the same time since they are already inside me. When I woke up from surgery the doctor told me I had stage 2 endometriosis and that he removed tissue from my ovaries but he didnt feel comfortable removing the tissue from my bladder. Note, the surgery was an excision surgery, not an ablation which didnt exist at the time.
In the months leading up to the surgery, I will admit to the public for the first time ever, I had left my husband and knew I wasnt trying to get pregnant anymore but decided to go ahead with the surgery in silence in hopes it would give me a few years of pain-free life. During my consult with the surgeon I asked him what was to follow. He said the surgery would give me a 3 month window to get pregnant and then it would all start growing back again. I delicately asked if he would continue to care for me even if I gave up on trying to conceive, and his answer was,… No. In his practice, the only concern was conception; not endometriosis management. I went along in silence for 5 more years, with steady pain, hoping that was the last of my endo, until I couldnt anymore. The endo came back last Summer with full force and I cried with mercy to thousands of women who would listen to my story online. I needed to find an answer to a fairly aggressive endometriosis growth rate (bladder, colon, ribs and diaphragm) from those who had been through the snakes and ladders of various drugs and surgeries.
Over the last year I have shared my story and I have met some of the most wonderful women who suffer (and have suffered) in silence either 1) over their infertility or 2) their struggle to get a diagnosis because they have no desire to get pregnant. In both cases, women feel ashamed of their bodies, their lives, their inability to DO or WANT the one thing we as women are supposed to do – bear children. On one hand we fear the shame of telling our families and friends that our bodies are too sick to bear children. On the other hand, we feel scared and threatened that we will be judged for not wanting to provide a life to this world. In both cases, we lose. And when there is a loss, it is too hard to talk about it. This is why, we women with endometriosis (PCOS, adenomyosis and several other women-only diseases) suffer together – in silence.
There is no treatment, there is no cure, there is no screening method and there are very few specialists who know how to treat us. My goal, as a writer and an endowarrior, is to help bring awareness to the disease so that women who have daily pain and anguish can soon be recognised as strong, courageous, and fearless.
I binge read all your posts the other day. I’m hooked. Recently went through what I thought was a flare and started taking the usual steroids used to get it under control. Anxiousness & irritability, the usual side effects, took over. Was nice reading your posts. Helped to make me feel normal, part of a larger group struggling with common issues. Actually helped Prerna too in understanding some of the physical and mental challenges (with emphasis) we deal with and that my moodiness is not in anyway related to her.
Turns out what I thought was a flare was actually a bug, yersinia enterocolitica, just all the symptoms mimicked that of UC. Last few years I’ve been flaring around spring of every year which further made me think it was just my UC acting up again. Wish I’d tested my poo before starting the steroids. All part of the IBD game I guess, trial and error, till you find a solution. I especially related to when you spoke of yelling/getting frustrated at people trying to help. (with their basic wisdom…”try yoga”, “avoid spicy foods” “eat less meat” This disease can make your behave in a way that sometimes wards off people when you actually need them the most. Or it can keep you away from social gatherings, furthering those feelings of isolation/anxiety/depression.
Inspiring stuff Anusha ben, just wanted to say thanks. What you’re dealing with is much worse than mine. 2 awful diseases that are in a bad state. Hang in there. From what I’ve seen, your attitude and energy is unmatched and I hope it carries you through. Also, you have your moms genes and she’s the strongest person I know.
Chirag thank you so much for reaching out and reading. It’s a lot to deal with but I started out on a strong foot because of your knowledge and your ear. I thank you for that. There are so many bugs out there that mimic the signs and it makes it so tough. I’m writing a post tomorrow about the decal calprotectin testing and how critical it is – but such a bad workflow – to monitor inflammation. Speechless at your kind words, thank you again!