Lina Kharnak thought she knew what was causing her mysterious pain, but doctors wouldn't listen to her. Years later, she learned her self-diagnosis was right—but the condition was so advanced she now required a nine-hour surgery, Sandra Boodman reports for the Washington Post.

Mysterious pain

"For most of her life, Kharnak's health had been good," Boodman writes. Then, when Kharnak was 42, she had a miscarriage. After that, she noticed her cramps during her period had gotten worse. She noticed pain in the left side of her lower back that extended all the way down to her knee. The pain went away when her period ended.

To get to the source of the problem, Kharnak initially went to her OB/GYN, who ordered a pelvic and transvaginal ultrasound that came up with nothing unusual, Boodman report. Kharnak remembers the doctor telling her, "I don't think it's gynecological."

One potential explanation for her pain was a sciatica, a disorder caused by a herniated disk or narrowing of the spine that results in lower back pain. To help her back, Kharnak began taking Pilates classes and consulting a chiropractor.

But in 2014, Kharnak's symptoms changed. She noticed that the pain no longer vanished after her period. Instead, it increased until the middle of her cycle and then vanished, Boodman writes. She also became severely constipated, had trouble urinating, developed a urinary tract infection, and saw her blood pressure rise to 140/90.

Kharnak's search for an answer

She visited a new internist who told her the symptoms she was experiencing were likely a result of being 25 pounds overweight and getting older. More tests found small fibroids, which are common among women before menopause, but everything else came out normal.

In May 2015, Kharnak visited another OB/GYN at a Manhattan teaching hospital who ordered a transvaginal ultrasound that, again, found nothing significant, Boodman writes. The doctor prescribed Kharnak a birth control pill to lessen the pain, but the side effects were "scary," according to Kharnak. "My hair fell out in clumps," she said, along with migraines and nausea.

She stopped taking the birth control pill and returned to the OB/GYN. Kharnak asked if perhaps she was suffering from endometriosis—a disease Kharnak had read about that occurs when the endometrium grows outside of the uterus. The doctor told Kharnak she didn't have "typical endo symptoms" and advised that she lose weight.

In July, Kharnak went to another doctor at a different hospital and, after describing her symptoms, asked if she might have endometriosis. The doctor told her she didn't, because she had back pain and not continuous pelvic pain, Boodman writes. He advised she take a contraceptive injection, which she declined. The doctor told her to "stop practicing Google medicine."

As she left, Kharnak recalled that she "felt so belittled." She said, "At that point, I was really, really done." Kharnak didn't see another doctor for two years, managing her worsening pain with over-the-counter painkillers.

In September 2017, she saw her OB/GYN, who ordered another ultrasound. Only this time, they couldn't find her left ovary because something was obscuring it. Kharnak recalled that her doctor "looked terrified."

A CT scan revealed Kharnak had severe hydronephrosis of her left kidney, meaning it was swollen so much it couldn't drain urine properly. The condition is treatable in the early stages, but Kharnak's case was so severe her kidney had stopped functioning entirely. The cause, however, was unknown.

Finally, a diagnosis

Kharnak decided to go see Tamer Seckin, an endometriosis specialist, in February. Seckin performed a pelvic exam and said he could feel areas affected by endometriosis, a diagnosis an MRI supported, showing the disease to be widespread, Boodman writes.

Seckin said that when endometrial tissue is left untreated, irreversible kidney damage can occur, like in Kharnak's case. He added that he was "baffled" other gynecologists wouldn't consider endometriosis as a possibility, but said there are many common misconceptions about the disease.

Further inspection found Kharnak's case to be worse than expected. Along with her kidney, Boodman reports, Kharnak's uterus had swollen to the size of a 14-week pregnancy. Not only that, her bladder and bowels were affected by the disease and she had a frozen pelvis—a condition in which scar-like tissue makes visualizing important structures difficult, Boodman writes.

Kharnak had to undergo a total hysterectomy and removal of her ovaries, a surgery that took nine hours. Seckin said the surgery was "very difficult," but successful.

Kharnak spent several months recovering from the surgery but is now back to work and pain free for the first time in seven years. "I think this surgery was a medical miracle," she said. "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" (Boodman, Washington Post, 9/15).