Arnesa Buljušmić-KusturaVerified account

About 4-5 years ago, my period changed. I had always had regular, albeit long and heavy, periods but suddenly I was bleeding for weeks at a time, months sometimes, and in excruciating pain. At first I ignored it, attributed it to the highly stressful life I was living. Hormones.

But the bleeding increased, I was hemorrhaging the heaviest pads within an hour. The pain increased too. But I dealt with it. One day, I changed my pad, went on an amusement ride & by the time I got off it, bled through my pants...all the way to my knees. So..I went to the ER.

The doctors ran tests...but mainly said it’s just menorrhagia and I should get on birth control. So, I went to my PCP who ran more tests and referred me to a gyno for more test. The pain continued. The bleeding continued. I was anemic but it was just “a heavy period”.

I got hormone pills, birth control. But the bleeding continued. The pain increased. Every day, I felt like my pelvic would explode. But I was never given any prescription pain killers and was told to take tylenol or aleve. This went on for years.

And then after numerous visits to numerous doctors, I finally got one that realized none of the other doctors thought to do a biopsy, none did a CA-125 test, none did a vaginal ultra sound. But he did...finally. & i got my diagnosis. Years later.

It was cancer, a cancer that could have been caught, treated and handled had a doctor actually listened to me and understood the fine line between a heavy period and hemorrhaging constantly.

Anyway, you guys know some of this story. I did the treatment. It was fine. I was (thankfully) still in the early stages. The tumors were removed. And I was to be good to go.

But last year before my last surgery (exactly one year ago btw) I begged my doctors to do a full and total hysterectomy. I told them how absolutely afraid I was of being in pain again, having the bleeding return, having to do treatment again. Did they listen? Ofc not.

Here’s the thing, the entire time I was in pain, bleeding, fainting...my doctors were all recommending treatment options that would not interfere with my fertility. Being that I was young. & despite the fact, I would tell them I did not want any more kids.

I was in pain and afraid for my life but because I was young and the cancer was in the early stages, all the doctors wanted me to keep my baby making abilities. That was their main concern.

Last year when my diagnosis finally got bad enough, I finally convinced my doctors I was sure and resolved in my decision not to have any more kids. So, they offered a compromise. They’d do a partial hysterectomy but not a total one, so I wouldn’t deal with menopause.

Anyway, they took some bits and pieces out, the tumors, removed the uterine lining, the tubes but kept the ovaries. Which is what I wanted removed. & ensured me this would be enough. I’d be good to go.

& i was for a while. No growths, no pain, no bleeding, and i was off the pills so I got to lose 40 pounds. Whooohooo. Except, it wasn’t a total removal like I wanted and halfway through this year I started to feel pain again.

& we were right back to where we started. Tests, doctors appointments, ultrasounds, but mainly being told I am worried about nothing. “We’ll keep an eye on you”.

I got married on September 1, 2018 and on September 7, 2018....I had a biopsy. The results of which I had to wait until today to discuss. Surprise, surprise....cancerous growths once again. & again..treatment options being offered that aren’t as invasive as a total hysterectomy.

But this time, I’m refusing to be ignored. I yelled and screamed at my doctor today...I am getting it all removed. I don’t care. Early menopause or the possibility of a decreased libido is still better than cancer and chemo and pain and bleeding.

And it’s absurd. It really is. Not having your pain taken seriously. Being told that the possibility of a some baby you may never have is more important than you feeling good and being healthy.

The cost of not being listened to has been extremely high for me. My savings were drained, my PTO was drained too so time off went unpaid, surgeries, procedures and treatments cost everything, misdiagnosis led to medication that made me worse, made me gain weight & feel like HELL

I think the worst thing is that now at a time that I am supposed to be joining my husband in our new home in London, my visa process will be delayed and due to these new surgeries I'll be stuck here...alone...while I recover.

I am so angry. so angry. I am so unbelievably fed up with doctors thinking women have to suffer. With not believing us when we tell them something is wrong. With painting us hysterical. Leaving us to suffer in pain, refusing pain medication, and placing our fertility above us.

Thanks everyone on the kind words & for sharing your own hell stories as well. I am sorry you weren’t listened to and heard when you needed it.

I just wanted to add a couple things. Again, I wanted to thank everyone for sharing their stories as well. Far too often women’s pain is dismissed. This is obviously a larger problem & another reason why reproductive justice has to go beyond just abortion.

The other thing is, I’m not sad nor am I really scared anymore. I’ve had issues with my body for so long, any time new health issues pop up...I’m ready to fight it out. I also know that so many women have it far worse, so many die b/c they are not listened to.

The C word is scary. When anything with our bodies is wrong it’s scary. But thankfully medical advances have been made. I’m lucky in that my growths have been slow. I will live & with surgeries I’ll be okay eventually. So, thank you for your kind words again.

My thread was written out of frustration and anger, more than sadness & fear. But I’m glad I wrote it. Mainly b/c I want people to know that you don’t have to suffer. You know your body. Listen to it. & yell if you need to in order to get others to listen to you as well.

Additionally, some of my doctors have been men and some have been women. Unfortunately, female doctors can be just as dismissive of women’s pain as male doctors are. There are good doctors out there, I’ve had some. But misogyny can cloud anyone’s judgement.

We have a long way to go when it comes to healthcare. Beyond just having access to healthcare, there is the high cost of it, financially and emotionally. The stereotypes that are forced upon us need to be broken so that they are out of doctors offices. We all deserve good care.

We deserve access to healthcare. We deserve free healthcare. We deserve treatments that won’t bankrupt us. We deserve to be treated with respect, listened to, understood, taken seriously. We deserve to be healthy. We deserve the right to live.

Despite the stress of being sick, coming up with the funds to cover the medical expenses in the midst of trying to get a UK visa, moving so our family can be together again....I am happy. I’m stressed but happy. I am loved and I love. I am cared for. I have seen & felt kindness.

Again, thank you all. Your words mean everything. The fight for healthcare continues. We will win one day.