It’s “Just Menopause”

I was lucky.

I only spent about nine months in medically induced menopause, caused by chemo. At age 35, I was borderline for chemo to cause permanent menopause, and my oncologist was fabulous in talking through what that meant with me and Ryan. I know some women are not that fortunate and are shocked to learn, too late, what chemo can do to their reproductive organs.

Going into menopause at age 35 comes with a whole host of health risks such as increased risks of osteoporosis, dementia, Parkinson’s, mood disorders and more. Our chance to have kids was suddenly taken away, seemingly overnight.

During cancer treatments, I suffered from horrific hot flashes and night sweats. It was especially awful during radiation where I was being burned alive from the outside, while simultaneously roasting on the inside. Sex was uninteresting and painful as my estrogen essentially disappeared overnight.

When my periods returned, I actually cried. I think Ryan did, too, to be honest. We were hopeful that some of the uncomfortable symptoms would improve and I could feel a little more “normal.”

And for a while, I did feel “normal”. I still had occasional hot flashes and night sweats, but for the most part, things seemed to be functioning well. It gave me some peace of mind that every year I got back normal hormone function, that I would lower my risk for osteoporosis, among other things. In 2020-2021, we spent months trying to get pregnant with no luck. I had my hormones and ovary function tested with an OBGYN and while things were still working, the results weren’t optimistic that I had much time left. Then, I did get pregnant, which resulted in a traumatic ectopic pregnancy. I think Ryan and I were both shell-shocked and heartsick from the results, plunging us both back into the “Sarah could have died” cycle of trauma.

It was not a good place to be in.

And then, a few months later, things started to get weird for me. I was having a whole host of medical issues that were unrelated to cancer, at least on the surface. Bladder issues. Weight gain. Sleeping issues. Periods becoming heavy and extra painful. Hair loss.

Two years ago, I started talking to every doctor I encountered about my symptoms. I had a feeling it was a hormonal change, but it felt like every doctor I spoke to looked at each symptom in a silo.

For example, after nearly a year of painful, recurrent UTIs, where I eventually cried in the doctor’s office and begged for help, after being lectured, repeatedly, about proper hygiene, I was finally referred to a urologist who performed a bladder scope. She told me my bladder issues were likely the of result internal scarring from radiation. Official diagnosis: interstitial cystitis. Nothing to be done except manage symptoms. No real discussions on how changing hormones can cause UTIs and bladder issues. I was instructed to stay away from spicy foods and take a blue pill when things flared up.

At every primary care appointment, I complained about new sleep issues and growing fatigue. I was lectured on practicing good sleep hygiene (which I already do) and told to take melatonin (which I already do). I was told to exercise MORE to combat weight gain and was lectured on a “healthy” diet.

With my oncologist’s NP, I discussed my increasing hot flashes and night sweats, fatigue and weight gain. I shared the bladder issues. She suggested I had sleep apnea. Then asked if I was depressed and if I wanted to start taking anti-depressants.

Time and time again, I was made to feel that my symptoms were somehow my fault.

Sleep better.
Eat better.
Exercise more.
Quit gaining weight.

Yes, two years ago, things were rough- we were still in the middle of COVID. My original oncologist moved to Arizona. I was miserable in my job. Ryan was miserable in his job. I was stressed. I was maybe a little depressed (wasn’t the whole world?). So, I brushed aside my intuition and tried to do as I was told. I changed jobs. Ryan changed jobs. I focused on swim goals. Lost some weight.

But, I was still struggling. A year ago, I was back in the oncologist office, back with my PCP, still visiting the urologist. I was still complaining about the same issues. And still getting the same replies.

“No, I am NOT depressed- I am just so tired all the time it sometimes feels like depression,” I remember saying last year in the oncology office.

Still, no REAL solutions were offered to me, and particularly at the oncologist’s office, while it was never said directly, it was implied, “What’s the big deal about hot flashes and fatigue. At least you don’t have cancer.”

I’ve run into this so many times both during and post-treatment: As a young survivor, it very much feels like my unique needs are not considered.

I am only 40.
I am active with big dreams and a lot of life left to live.

The average age of a breast cancer diagnosis is 62. Those women have already, most likely, gone through menopause. Blasting their ovaries with chemo doesn’t do exactly what it did to mine. Their needs are different.

Yet, over and over again, I feel as though I’m lumped into the same category with a 60-year-old. First, it was my PT during treatments who told me I was harming my heart by swimming through chemo and then was shocked when I rocked the treadmill stress test two days after finishing chemo. Most recently, my annual mammogram was denied by my insurance because they only allow for one screening mammogram prior to the age of 40. Mammograms are the best way to check for a reoccurrence, and my insurance company denied it because I was too young; saying if there was family history of BC, they would have covered it. My oncology office refused to recode or back me up. Apparently, a personal history of triple negative BC didn’t matter. After nine months of appeals, I was forced to pay out of pocket for a mammogram, for basic health care, because I was under 40.

I know menopause is not widely understood or researched well. But, I knew I was going through it. Doctors dismissed me, minimalized my concerns, encouraged me to take meds that mask symptoms instead of treating or discussing the real issues. NPs were afraid to give me solid answers because of the possible hormonal implications. It’s been rage-inducingly frustrating.

Two years ago things were rough; a year ago they were worse; and about 6 months ago I really started to struggle.

I lost all motivation. I don’t want to swim. I’m moody, grumpy, depressed; extra prickly. I can feel the hormones raging, like constantly suffering from PMS. I can see the changes in my body. Recently, I started sobbing when Ryan made a joke about how I can’t seem to keep plants alive, a common joke over here. I never feel rested. I’m good at pushing through, catching myself feeling irrational, and doing my best to show up. But, man, some days it is so hard to mask what I am feeling internally. God bless Ryan for hanging in there with me. I know I’m difficult (more so than usual, anyway).

I’ve talked to every medical professional I have about what is going on for two years and no one said “You’re going through menopause.”

Internet research lead me to that conclusion, but I couldn’t figure out why no one was telling this to me and offering solutions. It’s so common in young breast cancer survivors.

And then a friend recommended “Next Level: Your Guide to Kicking Ass, Feeling Great, and Crushing Goals Through Menopause and Beyond” by Dr. Stacy Sims.

I nearly cried reading some of the chapters.

I was not alone. I had answers. I had possible solutions. There WAS hope.

I’ve since changed oncologists and had a heart to heart with my primary care doctor. I went to appointments armed with questions from this book. My new oncologist SAW me and HEARD me. He told me some things I could do, safely.

It’s only been a couple of weeks since we’ve made some changes, so the verdict is still out on where this journey is taking me; however, I’m optimistic that I now have a doctor who will listen and hopefully I can see changes and results sooner rather than later.

It shouldn’t have taken two years of suffering to get to this point. No matter who you are; male or female, young or old, cancer survivor or healthy: Please, advocate for yourselves. Don’t dismiss your intuition. Find people who care.

And read this book. Seriously. It may not have all of the answers or be right for everyone, but for me, it at least gave me a starting point to feel empowered with my health care team and validated that I am not, in fact, insane.

I want to keep swimming, for years and years to come- and feel good while doing it.