Ingrid has been in pain every day for almost 30 years. The pain is so unbearable that her life is completely disrupted. Doctors still don’t know exactly what causes her complaints. “I was and am mainly seen as a difficult patient.”
“It’s mainly about pain in my small pelvis,” says 54-year-old Ingrid. “It feels like little splinters of glass in the pelvis going back there and breaking you inside.”
‘I can’t run’
“I sometimes compare it to the pain you feel when you accidentally get boiling water on you. You want to run away immediately,” she explains. “But I can’t run, because it’s in me.”
Ingrid can now only lie down, sometimes she manages to slump a bit. “Otherwise, the pain will soon become unbearable.”
Search of almost 30 years
After a search of almost 30 years, it is still not clear what the exact cause of Ingrid’s complaints is, let alone what can be done about the pain.
The doctors suspect that she has had endometriosis in the past, a condition in which tissue similar to endometrium grows outside the uterus. “In any case, 28 years ago I had a very difficult birth, where medically not everything went according to the book,” says Ingrid.
Antidepressants, but not depressed
According to her, ‘that’s when all the trouble started’. After giving birth, she was suddenly unable to do anything physically. So she fell down the stairs. “I went to the GP, who said, ‘You have postpartum depression.’ My answer was: ‘I’m not depressed, I want nothing more than to take care of my baby and lift it and change it. But I can’t because of the pain.'”
Nevertheless, Ingrid was prescribed antidepressants. Only later it turned out that she was indeed not depressed, but had a double neck hernia. At the same time, the pain in her pelvis started to play up. Seven operations followed, but the pain did not go away. In fact, the operations created extra painful scar tissue.
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‘Not taken seriously’
Doctors now suspect that her serious complaints are caused by Pelvic Congestion Syndrome, in which a tangle of varicose veins in the pelvis presses on nerves and tissue. What can be done to relieve the severe pain, however, is a mystery.
“That is perhaps the most difficult thing, that I was mainly seen as a difficult patient who does not fit in a drawer, and who could not be helped properly,” says Ingrid. “I have often had the feeling that I was not taken seriously, and that doctors referred me, simply because they did not know how to deal with the complaints I had.”
Request for euthanasia
After years of pain, Ingrid is so desperate that she recently decided to embark on a euthanasia process. “At the pain outpatient clinic, at the urologist; everywhere I was told: ‘You have finished treatment, we can no longer help you,'” she explains. “The GP understood my request for euthanasia.”
But when the first talks about the euthanasia request started, with Ingrid herself and with her partner Frank, panic set in. “I then thought: I don’t want this at all, I want to live, but without that extreme pain,” she says.
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Motivation to keep going
Meanwhile, a new doctor has given Ingrid hope through treatment in Switzerland. “The best doctor in this field is located there, she told me. But it is very expensive and is not reimbursed by my insurance. Still, it gives me a bit of hope, maybe it can be done in the Netherlands someday.”
The fact that women with inexplicable complaints stir and demand attention also motivates her to continue. “If anything changes, if we’re taken more seriously, and my story can help other women be heard and treated better, I think that’s a big thing.”
View the entire report here.