Lina Kharnak had developed intense cramps and back pain in the weeks leading up to her periods. Doctors were stumped. After doing a little research, she went to some specialists and asked whether she might have endometriosis, but they openly dismissed the possibility and instead focused most of their attention on treating her symptoms.
Years later, once her kidneys had shut down and she required intensive surgery to save her life, Kharnak learned she had been right the whole time.
When Kharnak suggested endometriosis as a possible cause of her symptoms, her doctor chided her:
Stop practicing Google medicine.
@UppityCancerP No better way to shame a person in pain than to discredit their “googling disease symptoms” so they… https://t.co/nO2udBZt54— Dagmar (@Dagmar)1537077885.0
Endometriosis, a condition suffered by 6.5 million American women, is the result of endometrium (the material that lines the inside of the uterus) growing outside of it, often on the fallopian tubes, ovaries, and other organs.
According to the Tampa Bay Times:
Sometimes the overgrowth spreads to more distant sites in the body. Abdominal pain, heavy periods and infertility are common.
good morning here's an infuriatingly familiar story: https://t.co/ATJe6I0HgJ— Abby Norman (@Abby Norman)1537099182.0
As Kharnak visited doctors to find the cause of her chronic pain, which was worsening with no end in sight, they repeatedly blamed her weight.
One doctor was particularly blunt:
She was about 25 pounds overweight and getting older and therefore more prone to health problems, Kharnak remembers him saying. The doctor prescribed a diuretic to lower her blood pressure.
It's time to hold doctors accountable & responsible for their dismissive & harmful behavior. This story has become… https://t.co/hdOqJUitO3— Jennifer Vanderputten (@Jennifer Vanderputten)1537033859.0
Kharnak described her emotional state as she went from doctor to doctor, each of them blaming her weight:
At first I was very angry at the entire paternalistic 'Go home, little fat woman, and exercise, and you will feel better' culture. I was mad at myself. And then I felt relieved that I had a diagnosis and a plan.
Meanwhile, Kharnak "consulted a chiropractor, underwent physical therapy and started taking Pilates classes." None of this helped her pain. In fact, things were getting worse: Her back pain was growing progressively worse until she was mid-cycle, then vanish completely. Though she felt fine after she ovulated, the two weeks prior would be filled with severe constipation and painful urination. Sex was painful and her normally low blood pressure rose to 140/90.
@UppityCancerP How horrible for her! Years of pain because no one would spare a few minutes of time or a simple sec… https://t.co/Jdw9kFDyUv— Ana (@Ana)1537143226.0
Doctors still did not suspect endometriosis, even when Kharnak's scans revealed "small fibroids, benign tumors that grow in the uterus and are common among women before menopause." At this point, however, her gynecologist was baffled and suggested Kharnak consult a specialist.
@endostats My mother passed from endo on her liver and kidneys. The doctor didnt believe her either.— Tricia Connelly (@Tricia Connelly)1537207016.0
And then 14 months later, after hoping the pain would go away with exercise, Kharnak saw two more doctors, both of whom told her endo was a non-starter; the symptoms simply didn't match up. Though the doctors couldn't think of what could be causing her pain, they did agree that weight loss and birth control might help.
Kharnak was at the end of her rope:
I felt so belittled. At that point, I was really, really done.
@UntoNuggan Took me 25 years before I found an obgyn who would go beyond "you need to take birth control for the en… https://t.co/EHohG4w1FO— drum major for the drunken parade of life (@drum major for the drunken parade of life)1537112873.0
Another two years of painkillers later, when Kharnak returned to her gynecologist, her left ovary couldn't be located. To her doctor's horror, something was blocking it. A CT scan revealed Kharnak's left kidney had shut down due to hydronephrosis, a blockage that stopped it from draining properly. The cause of the blockage was unknown.
Knowing there was something seriously wrong with her body, Kharnak followed up on the lead her doctors were so certain wasn't the culprit:
I Googled 'endo specialist in New York City,' Dr. Seckin's name came up first, so I went to see him.
Yeah sex is good but have you ever found yourself a doctor who takes you seriously, appreciates that you’ve researc… https://t.co/a22nSwSkrj— Josie Young (@Josie Young)1537340763.0
Tamer Seckin, an OB/GYN surgeon, immediately realized these symptoms might be caused by his area of expertise, even though "[Kharnak] did not have classic endo pain." Uncertain why her other doctors had refused to even consider endometriosis, Dr. Seckin noted he had "a couple of other patients" whose endometrial tissue had caused kidney blockage.
Dr. Seckin told Kharnak "it's worse than you think," before giving her a grim diagnosis:
In addition to her kidney, the disease, later classified by pathologists as deeply infiltrating, had spread to other organs, including her uterus, which had swollen to the size of a 14-week pregnancy. Her bladder and bowel were also affected, and she had a frozen pelvis, a surgically treacherous condition in which extensive scarlike tissue makes it difficult to visualize important structures.
@TB_Times Unfortunately, this happens all the time to women. We are told lose weight, exercise, etc when we KNOW something isn’t right.— Jennifer W (@Jennifer W)1537183737.0
Kharnak underwent a nine-hour surgery involving several specialists. Now, after several months of R&R, she's able to return to work pain-free for the first time in seven years.
@UntoNuggan Nine hours of surgery. Nine.— RheumofHerOwn (@RheumofHerOwn)1537112358.0
She told the Tampa Bay Times:
I think this surgery was a medical miracle. I wish someone had told me to find an endo specialist right away and to stop wasting time on regular OB/GYNs, even prominent ones.