A woman who has spent years “in constant agony” due to a rare condition called nutcracker syndrome is trying to raise money for life-changing surgery.
Katie Shalka, 28, has had flank pain for nearly a decade but first started visiting the doctor about it in 2018 after when it shifted from “bad” to “horrendous.”
She spent months going in and out of appointments and visiting hospitals for tests — and was consistently told her results were “normal” and the pain was likely “just bad periods.”
It wasn’t until her family demanded more scans — after roughly a year of uncertainty — that a specialist finally diagnosed her with nutcracker syndrome (NCS), which is when the left renal vein becomes compressed.
The compression is usually due to becoming trapped between the abdominal aorta and superior mesenteric artery. The condition got its name because the compression of the renal vein is similar to a nutcracker cracking a nut.
Katie, who lives in east London and is an actor, says she has struggled with pain on the side of her body since she was a child.
Things deteriorated in 2018, and she started booking appointments at the doctor — but feels she was never taken seriously.
“I was in appointments all the time and they kept saying all the typical stuff to me. ‘It’s just your period. Are you sure you’re not pregnant? It’s just because you’re a woman,’” she said.
“It was so frustrating because I was in all this pain and no one knew what to do.”
One day, when Katie was working at a bar, the pain became too unbearable and she collapsed.
“I just couldn’t take the pain,” Katie said. “I was taken to [the] hospital and they did tests — but they all came back normal.”
The pain persisted, though, and Katie took herself to the emergency room on several occasions. But still, no abnormalities appeared in blood tests.
Eventually, Katie’s family demanded doctors conduct an internal scan, which Katie describes as “excruciating.”
“It was indescribable. But still they said there was nothing,” she recalled.
Katie was referred on to a urologist and was nearly passed on to a psychiatrist as doctors were convinced there were no physical issues.
However, a consultant then looked back over her initial scan — and finally noticed an issue.
“He called me back in and described my left ovarian vein as ‘torturous,’ He said this could be a vascular problem,” she said.
The consultant referred Katie to a specialist, who almost immediately diagnosed her with NCS.
Since her diagnosis, Katie has had numerous medical procedures, but she says none have relieved her pain and many have only exacerbated it.
In February 2020, Katie underwent a left renal vein transposition, becoming only the seventh person in the UK to have this procedure. But months later, she was still in agony.
“It was horrific. Five months later, I was still in pain, but doctors said it was all normal,” she said.
“I went on holiday to Turkey to try and forget about it but I was in so much pain I couldn’t enjoy it. I was also so swollen I literally looked pregnant. It was crazy.
“Then, while I was on holiday, a doctor called me and said one of my scans was showing my vein was blocked again. So I had to have a procedure again when I went home.”
Katie has had various other procedures since then but says they are all focused on “managing the pain” rather than “fixing the problem.”
“I have pain every single day. 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 said.
She had begun to lose hope of ever living a “pain-free life” until a few days ago when she visited a new specialist who is confident he can help her.
“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,” she said.
However, the surgery she desperately needs costs an eye-watering £50,000 ($62,866) that’s not covered by the UK’s NHS — so her partner Romy Ben-Hur, 32, has set up a GoFundMe to help raise the money needed.
“The thought of having this surgery and not being in pain anymore? I genuinely can’t imagine it,” Katie said. “I can’t remember what it feels like to not be in pain.”
Katie’s partner, Romy, says Katie “cannot face this financial burden alone.”
“She never wants to be a burden and feels guilty about sharing the pain she is in. But it is constant for her. It is agony. I just hope we can help her reclaim the life she deserves,” she said.
“Her determination and strength are incredible, but she needs the support of compassionate people to make this surgery a reality.”
