After a month of medication nothing has changed. “During an investigation, it turned out that what they had mistaken for Crohn’s had simply been a reaction to medication. Another scan showed that my ovaries were slightly enlarged. The gynecologist did keyhole surgery and found very mild endometriosis. But according to the doctor, that couldn’t possibly be the reason for my extreme pain.”
For years, Hidding experiences pain. “By now it felt like the doctors thought I was acting up. The extreme pains were attributed to my cycle and hormones. At one point I was even told to go to a psychologist and was asked if my complaints could be caused by stress.”
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Dark humor
For eleven years, Hidding lives from hospitalization to hospitalization. “During those eleven years I was admitted at least twice a year. Then the pain became so extreme that it could only be remedied in the hospital. Sometimes I was at the doctor’s office three times a week. I’ve maintained that all these years with a good dose of black humour. At one point my husband and I said when we were back at the doctor’s office: ‘Next time we will bring nuts and a bottle of wine, because this is our datenight become.’”
Her pain therefore has a major impact on Hidding’s private life. “I had always worked since I was 14 and at some point I had to stop. That was very harsh. In addition, you don’t see my complaints on the outside either. It took years for my own mother to see what the pain was doing to me. She was visiting me when I had a seizure. I shrieked in pain, and she said, “Gosh, that’s really annoying.” Then I thought: if only you knew.”
Cover
Over the years, Hidding undergoes several surgeries in the hope that those surgeries will help. Her right ovary and fallopian tube and gallbladder have been removed, and a catheter has been placed in her kidney. When she ends up in hospital again in 2017, there will be a turn.
“The doctor came to discharge me with the message that my stomach ache was because I was taking morphine. That would have made me constipated. Then I really freaked out and I said again that the pain comes from my back. How can it be a blockage? I could pinpoint the exact spot of the pain. A neurologist who was familiar with ACNES was brought in. He almost immediately said, ‘I know what you’ve got.’”
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Nerve disorder
Further investigation reveals that Hidding suffers from ACNES/LACNES/POCNES, a nervous disorder. That she can pinpoint the pain points precisely is one of the greatest indicators of the disease. “I finally knew I wasn’t crazy, I hadn’t made up the pain,” she says. “ACNES is the most common form that occurs in the abdomen. LACNES is in your side. The rarest form is POCNES, which is in your back. Normally ACNES is in nerve branches, but in my case the disease is in a main nerve in my back. That is why I have all three variants.”
Several attempts were made to relieve her pain. “In 2018 I had an operation in which the nerve branches in my abdomen and side were cut. During that operation, my breathing stopped three times. In addition, most of my pain comes from the back, and the doctor thought that was too risky to operate. Another doctor was willing to try, but chances were the pain would only get worse. Then I would have had no life at all, now I can do something with pain relief.”
Euthanasia declaration
Finally, in 2020, Hidding decides to draw up a euthanasia statement. “I had a bad period and wanted a way out. At the moment I don’t want to use the statement yet, only if I really can’t take it anymore. I’m going to get a piercing first that might help.”
The diagnosis still affects her life every day. “You always feel like you’re falling short. As a partner, as a mother, as a sister. The disease is sometimes also disabling. After a day at the amusement park I am recovering for three days. The most important thing for now is that my children have enough active memories of me.”
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2023-07-14 13:27:56
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