“My cochlea is functioning normally, but the connection is missing. As a result, sounds and pitches do not reach my brain properly.” The solution? A hearing aid. “Suddenly you are an ENT patient. The only person I knew with a hearing aid was my grandmother. It felt very lonely, because no one understood how my world had changed. My brain now has to work much harder, so I quickly get overtired.”
Tinnitus
A year later she is back on the operating table. Her cholesteatoma has come back in her right ear and two months later she has the exact same thing in her left ear. “Then my world collapsed. I just got a new job and my husband and I wanted a second child.
The third cholesteatoma is still small. So Janneke first has to wait until it is big enough to be removed. “That is incredibly annoying and goes against your nature,” she says. In the meantime, she miscarries. After that pregnancy, the cholesteatoma appears to have grown, and she has to go under the knife again. The operation is a success.
Not much later she becomes a mother again. After half a year she again suffers from her left ear. The cholesteatoma has come back for the fourth time. It is immediately removed. Yet she is left with hearing loss and tinnitus.
Waldemar Torenstra has heavy tinnitus: ‘I thought for a long time: as long as I don’t go crazy’
Hoormij NVVS Foundation
“In my opinion, hearing problems were for older people. I couldn’t identify with that image because I was in my thirties. Nowhere around me did I know anyone who went through the same thing as me. I wondered if I was the only one.” Janneke therefore joins the Hoormij Foundation. There she meets two fellow sufferers, Kim and Esmé. Their situation is very similar to Janneke’s. “My cholesteatoma was discovered three times after my pregnancy. That was also the case with them.”
According to Ten Tije, there is a possibility that cholesteatoma grows faster due to pregnancy. Women then get an estrogen boost at the beginning and at the end.
The body then produces up to a thousand times more estrogen than usual during pregnancy. “Researchers from the United Kingdom have looked at the tissue of cholesteatoma. They discovered that its growth may be stimulated by the female hormone estrogen.”
Stichting Hoormij NVVS calls on women to register if they recognize themselves in Janneke’s story. And this is why, Janneke explains: “It is a rare condition. So, as a scientist, I find it striking that there are already three out of four women in the working group where this has happened. Research is needed to substantiate this scientifically. For this, twenty women must first report with a similar experience.”
After years of hearing loss, Raphaella (23) still opts for a hearing aid: ‘Makes me unique’