Woman living with rare ‘nutcracker syndrome’ for nearly a decade shares symptoms that were dismissed by doctors
A woman who lives in 'constant agony' due to a rare condition has revealed what symptoms she experienced before her diagnosis.
Katie Shalka has told how flank pain - which occurs on the side of the back, below the rib cage and above the waist - has tortured her for nearly a decade.
It first began affecting her when she was just a child, but the-28-year-old was forced to contact her GP in 2018 when her life-long discomfort went from 'bad' to 'horrendous'.
Despite being sent for tests and making numerous trips to A&E, she claims she was repeatedly told her results were 'normal'.
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She said: "I was in appointments all the time and they kept saying all the typical stuff to me. 'Are you sure you're not pregnant?' 'It's just because you're a woman'."
According to Shalka, she was informed that the relentless pain she was in was likely the result of 'bad periods'.
A specialist then finally diagnosed the source of Shalka's pain around a year after she raised the issue with her GP.
The London-based actor has nutcracker syndrome (NCS), which occurs when your left renal (kidney) vein, which carries blood back to the heart, becomes decompressed.
According to Cleveland Clinic, symptoms of this rare condition can include blood in your urine, feeling dizzy when you stand, and flank pain on the left side of your body.
Women may also have pain during sex, when they urinate, as well as pelvic pain, while men might notice swollen veins in their scrotum.
Medics can carry out tests which can also pick up on symptoms of nutcracker syndrome, such as a low red blood cells, too much protein in your urine or microscopic amounts of blood in it.
Despite finally getting a diagnosis and undergoing several procedures, including a left renal vein transposition, Shalka says she remains in extreme pain - and reckons some attempts to remedy it might have only made it worse.
"I have pain every single day," she said. "It's never not there. Sometimes, I have flare-ups, and it gets worse.
"But when those stop it just goes back to what it was before - a constant pain."
She explained she is losing hope that she will one day live a 'pain-free life', but hopes a surgery conducted by another specialist could get her there.
Her partner Romy Ben-Hur, 32, has set up a GoFundMe to raise money for the the operation, which costs a whopping £50,000.
Shalka said of the prospective surgery: "The thought of having this surgery and not being in pain anymore? I genuinely can't imagine it.
"I can't remember what it feels like to not be in pain."
She explained she first began experiencing flank pain as a child, which then persisted throughout her teen years and adult life.
Although she raised her concerns with doctors, Shalka says she was left 'frustrated' as she felt she wasn't taken seriously by them.
On one occasion while working at a bar, she collapsed from the pain she was in.
"I just couldn't take the pain," Shalka continued. "I was taken to hospital and they did tests - but they all came back normal."
Later, she underwent an 'excruciating' internal scan after making several more trips to the doctors, which left her in 'indescribable' pain - only for medics to 'still say there was nothing'.
Shalka was then referred on to a urologist and claims she was nearly being passed onto a psychiatrist as medics believed she had no physical issues.
But a consultant who glanced back over her initial scan finally managed to spot something.
"He called me back in and described my left ovarian vein as 'torturous'," Shalka said. "He said this could be a vascular problem."
The consultant then referred Shalka to a specialist, who almost immediately diagnosed her with NCS - which got its name because the compression of the renal vein is similar to a nutcracker cracking a nut.
The 28-year-old says she has tried various treatment options since then, but complained that these are targeted at 'managing the pain' rather than 'fixing the problem'.
But she now has new found hope that she could one day be free from pain after her partner put her in touch with a new specialist - but the private procedure costs £50,000.
Shalka explained: "He told me about a procedure he could do - which he says should have been done in the first place and could have saved me a lot of pain."
The couple hope to raise £22,000 with their GoFundMe to put towards the surgery.
You can donate to Shalka's GoFundMe here.
Olivia Burke