15 Years Too Long

Once a month,

Twelve times a year,

Pain is my inevitable fear.

Twelve times a year, times fifteen years.

One hundred and eighty time’s too many,

And fifteen years too long,

Chronic pain, fatigue, and brain fog has come and gone.

At first for a day or two, and then for more until eventually my pain accompanied basic human needs like taking a walk, a shit, and having sex.

I refuse to sugar coat it any longer, this is the whole story . . .

Endometriosis is a disease of the endometrium, the fancy word for the lining of the uterus which sheds monthly with your period. Basically, when a woman has endometriosis, this lining “retrogrades” and goes backwards through the fallopian tubes and ovaries rather than down and out the way its supposed to. This creates scar tissue month after month on the uterus as well as the surrounding organs and can cause adhesions, trapped pools of blood in the pelvis, cervical dysplasia, amongst a whole host of other painful issues.

That’s is what endometriosis does to the body. This is what it feels like:

Full body shivers.

Cold sweats.

Hot sweats.

Faint body.

Foggy vision.

Numb legs.

Pain beyond your wildest dreams (many relate it to childbirth or a heart attack).

Vomiting.

Diarrhea.

Migraines.

Lower back pain.

Hip pain.

Radiating sciatica.

Emotional trauma and sense of complete worthlessness.

This is what I realized as all of these years of chronic pain came to head for me:

The reason it took me this long and it had to get this bad for me to find the proper treatment isn’t because I wasn’t looking for help privately, it’s because that’s all I was doing. I was speaking about it privately with close friends and family but very rarely speaking publicly. And that’s what most women do because that’s what we are told to do . . .

Periods are private.

To suffer is to be a woman.

Pain is all mental.

It’ll go away after you settle down and have kids.

BLAH. BLAH. BULLSHIT.

I would occasionally confide in people I was close with about my experience but I always felt like a burden and underplayed the true terror I was going through so I wouldn’t scare them.

And then, when I learned that 176 million women worldwide suffer from this disease my first thought was “How come I didn’t know that?! Why does nobody talk about this?!” and then it dawned on me like an blaring intercom system inside of my head, “Paula! YOU don’t talk about this!” At least not 100% openly, honestly, and urgently which is exactly what anyone who suffers from this disease should be doing because it is an urgent issue. No one should have to put up with chronic pain for any extended period of time without some form of diagnosis and prognosis for treatment.

So no more silence.

I’m going to share every detail from this point forward. I know it will be a lot, I know it will be personal, I know it might make some people uncomfortable but that’s exactly what it should be and do in order to make a change.

176 million is roughly 1 in 10 women, so we all are bound to personally know someone who deserves to feel less alone, heard, and supported.

We deserve to know that we will not be silenced, our pain will be treated, and research will be dedicated to ending the “mystery” surrounding this disease. Because as of right now, what we know is pretty fucking limited due to our healthcare system which is designed to profit off of us by waiting until you are sick enough to be cut open after years of stuffing pills down your throat, rather than focusing on ways to understand and prevent 7.4 years of pain. That’s the average amount of time most women wait and wonder in pain before they are eventually diagnosed with endometriosis.

It’s just not right - it’s fucked up. But it’s all good because,

I will heal. That’s what I was designed to do.

I just won’t do so silently. So, let’s start from the beginning…

I was thirteen when it first swallowed me.

I was naked, unaware of what I was feeling, and overtaken with an indescribable internal terror and legitimate fear of death.

My seven year old brother called an ambulance.

They immediately shot me up with morphine and basically told me - “this is what it’s like to be a woman, get used to it.”

By the time I was in college, going to the emergency room was at least an annual occurrence. Sometimes because the pain was so bad I seriously thought I was dying and I wanted to make sure nothing else other than “being a woman” was wrong with me, and sometimes because other people around me were so concerned that they called an ambulance even when I asked them not to. In case you weren’t aware, ER visits are about $1k a pop.

It wasn’t until I was about 22 that anyone in the seemingly endless cycle of ER rooms and doctors offices even uttered the word “endometriosis” to me. A nurse coming in to check on me first said it. And it wasn’t even like - “You have this.” It was like, “Have you heard of this? You might have it and if you do, it could attach itself to your other organs - like your bowels.”

As if I’m supposed to figure it out from there on my own? #WTF

She provided no referral to do more tests, no direction or suggestions for treatment whatsoever other than to go to the gyno - which I had done countless times only to be prescribed birth control and pain killers, which by the way, doesn’t change anything. You still have pain, you still have to skip work because you can’t function on strong pain pills, you still feel traumatized, worthless, and broken for at least a couple of days after the sharp pain ends and the dull pain begins.

Not a one doctor had suggested diet changes, causes, natural anti-inflammatory remedies, or any of the variety of hormone suppressant methods that I now know can help to slow the growth of endometriosis.

Anyway, I started asking many doctors if I have this mysterious word (or disease) I had just learned about - endometriosis - and they said I might, that a lot of women have it, but to know for sure they’d have to do surgery so I should just take birth control without the placebo pills (aka skipping your period indefinitely) UNTIL I’m ready to have kids.

Not if, until.

They did not tell me the rates or statistics of this disease, the potential for infertility, the damage it can to your other organs, or anything else relevant to my immediate health like how food/lifestyle can affect the disease’s progression, etc.

They also said, while you’re showing all the symptoms, most women don’t develop endometriosis until their late 20s and early 30s - when all the damage is done and you have to surgery whether you want to or not, which of course they didn’t say.

And we now know that this timeline is entirely untrue.

I first showed symptoms when I was 13. That’s when I should have been taken and treated seriously. This is the case for most women with this disease if you actually take the time to listen to their stories. When I was 23 a doctor tried to tell me I had two uteruses - I don’t. That same doctor tried to perform ablation surgery on me said he MAY remove my left ovary and fallopian tube, if I gave him permission.

Again, as if I’m supposed to know what’s best for my health versus the doctor who was educated for years to do exactly that for me?

Long story short, I refused and sought a second opinion, and third, and a fourth. I was seeking a couple of simple things: compassion to my situation (which for some reason was very rare), answers to my questions, and a clear treatment plan that didn’t include birth control pills or pain killers that altered my state of mind, hormones, and literally made me feel like a psychopath.

Eight doctors later, 5 years later, at age 27, I finally found the answers I’d been looking for all along we were actually speaking to me through my body.

Over the course of that time I had developed serious allergies to the point where I was blowing my nose for like an hour every morning (until my sister got me a Molekule air filter) and peeing like 5 times throughout the night. My pelvic pain started to spread into radiating pain down my legs for at least 2 weeks out of the month, sometimes so much so that it made it difficult to walk comfortably (even when I wasn’t on my period).

Right after my 28th birthday, I had the worst endo episode or “flare up” of my life. My whole body went limp as I sat on the toilet and the next thing I knew, I was passed out on the bathroom floor, having lost complete control of my bowels with at least a 15 minute lapse of consciousness. And then the pain I knew all too well began. Immediately I knew that my greatest fear (and morbid prophecy by my ER nurse had mentioned several years back) - my endometriosis had began to affect my bowels, bladder, and overall immune system. All of my symptoms were related, I wasn’t and am not crazy, and there are options for treatment by doctors that are supportive of my needs.

Tomorrow, I will begin my rebirth.

It’s only going to cost me roughly $8k plus some time off work to make it happen - which is fucking ridiculous by the way, but I’m going to make it happen! I just have to take a quick break here to say thank you here to American healthcare, big pharma, and insurance companies for fucking us women over so gently that we don’t even notice it until we are bent over by the system, but I’ll save all my thoughts on this disgusting abuse on women (and anyone who can’t afford basic health care) for another post.

On a brighter note - I finally found a doctor who I trust immensely. On Monday, I will have a robotic assisted, laparoscopic excision and ablation to remove all the scar tissue that has built up in my pelvis and on my organs. Everyday I can after my surgery, I plan to write to all the other people suffering from this chronic disease about my healing journey, here.

Thank you for listening.