The year is 2017. I started it off by turning 30. I have grown up in a society and time that has seemed to have a lot of freedom, rights and equality. Then why did I march on Washington on January 21st, 2017? Why did I need to?
For my health. Which, still, is being talked about by old white men in government as an issue. No, it is a right. A right that all humans deserve to have the first say in.
So, here I am. A 30 year old in the United States of America who has had to fight, advocate and march for basic quality of life healthcare since I was 15. Why did I need to?
Because I might have a very mistreated, hard to diagnose, not talked about, under researched women’s disease called Endometriosis.
For half my life I have experienced extreme pain during menstruation, almost lost consciousness more times than I can remember, been hospitalized with a heart rate of 46, developed chronic headaches, fatigue, pelvic pain and irritable bowel syndrome, among other things (yes, there are more symptoms). My overall quality of life has deteriorated because of this. I have spoken to many doctors in these 15 years, and not until recently did any of them bring up this disease. In fact, I self-diagnosed myself with it years ago, but again only recently learned more about how serious it is. Here are some of the things I have been told by doctors around the country, and even overseas, when I came to them with the above symptoms:
- Have children and it will go away (told to me as a 15 year old and brought up again in my early/mid twenties – please note I don’t want children!)
- Cramps are normal, some people just have it worse (Fuck you, doctors.)
- Take pain killers for a week before and during your period to manage the pain (I am now more or less immune to pain killers, including prescription 800mg Ibuprofen. I guess I am Superwoman.)
- Go on birth control pills (sometimes continually) to manage the pain (I have taken every dosage of pill, but still had attacks, though less frequent. I currently have a hormonal IUD.)
- A diagnosis of dysmenorrhea (the medical term for painful periods – no shit, that’s not a proper diagnosis.)
- Go on Lupron (a hormone treatment that tricks your body into early menopause – please note that I just turned fucking 30 years old, not 50.)
So, what the fuck is Endometriosis?
Endometriosis is a female disease in which the tissues of menstruation causing inflammation are found elsewhere in the body outside the uterus. It is associated with monthly menstrual cycles and is characterized by pelvic pain, heavy periods, prolonged bleeding, severe cramps, and pain with sex (dyspareunia).
Endometriosis is a painful reproductive disorder that affects 176 million women worldwide. The economic impact of endo is staggering: businesses lose billions of dollars each year in lost productivity and work time because of the disease. A leading cause of infertility and chronic pelvic pain, it has also been linked to other health concerns, including certain autoimmune diseases, fibroids, adenomyosis, interstitial cystitis, and even certain cancers. It is also one of the leading reasons for laparoscopic surgery and hysterectomy in the United States.
So, 15 years later, here I am at 30 finally getting closer to receiving the care and treatment I should have had back then. I am lucky that I did not have a hysterectomy in my twenties. I am lucky that I am not currently going through menopause. But to go half your life without ever feeling listened to? That’s some major fucking bullshit right there.
Through a search at my local library for Endometriosis I came across a book written by Dr. Tamer Seckin, an Endometriosis specialist in NYC, called The Doctor Will See You Now: Recognizing and Treating Endometriosis (only just published in 2016, much to my surprise). I immediately requested it, only hoping to seek more knowledge on the subject, but knew from the first page I had to see this doctor. By the graces of my mother (who is paying the out-of-network costs because healthcare still sucks in this country, so what’s the point of my insurance?), I will have an extensive consultation with him in March, that could lead to surgery, which would ultimately change my whole life.
But not everyone with this disease has someone who can help them. I certainly didn’t think I did. There are not many specialists on the matter, and your local gynecologist will claim they know enough about it to “treat” it (as mine did), when in reality this disease is not being researched enough. In fact, some may say Endometriosis is what used to be known has hysteria in women.
In the meantime I am still dealing with my gynecologist, pleading my case for an MRI (which Dr. Seckin needs to rule out cancer if I need surgery). In fact, my gynecologist said today that he has no medical grounds to order an MRI, just an ultrasound (which I will have done with Dr. Seckin anyway). This is the same fucking asshole that told me there is an 80% chance I have Endometriosis. Is that not enough?
So, this is why I march. So that the women who were not heard and sent away by men to institutions, didn’t experience that for nothing. So that I don’t have to go through my asshole doctor to get an MRI covered by my in-state insurance (hello, universal healthcare) and save me an extra $800. So that all women have free access to birth control and abortion. So that we’re not stuck with a child we don’t want and so this beautiful planet is not overpopulated. I will continue to march for as long as I need to, but I honestly hope it doesn’t have to be for another 30 years. As my mother’s Women’s March on Washington sign read “I’m still protesting this shit?!”. So please, come march with me. Come bleed with me.