Hearing loss, dizziness, runny ear and pressure behind the ear; Janneke, Kim and Esmé can talk about it. They all have to do with cholesteatoma: a benign tumor or chronic, aggressive middle ear infection.
A rare condition that is often noticed late, with far-reaching consequences. They came into contact with each other via Hoormij∙NVVS. And realized that all three of them were diagnosed with cholesteatoma shortly after giving birth. Coincidence or is there more to it?
Influence of hormones
The production of estrogen during pregnancy appears to be a driver of cholesteatoma. Dr. Fleur ten Tije, involved in the cholesteatoma committee of Hoormij∙NVVS: “Researchers saw that estrogen proteins were present in large quantities in women, in contrast to men. As a result, they suspect that cell division accelerates during pregnancy and that the skin cells (in the case of cholesteatoma) already run wild grow even faster.
A thousand times more estrogen
In the first phase of pregnancy, about a thousand times more estrogen is produced than before, and then levels off. Just before giving birth, estrogen again takes over. So women actually get a boost twice. The idea that pregnancy and the production of estrogen affects the cholesteatoma does not seem so crazy. For women with hearing problems or a history of cholesteatoma, this is a moment to be alert.
Three women ring the bell
Realized that the diagnosis of cholesteatoma could be related to the birth of her son Kim himself later. Through Hoormij∙NVVS she met other women who – just like her – were just mothers and had undergone or are about to undergo surgery. “My hearing bones were broken, but they have partly been repaired with my own cartilage and partly with implants. And my facial nerve is indeed affected, but fortunately that has not led to facial paralysis. With Janneke the damage was much worse.”
When Jane was diagnosed, she was just the mother of Tijn. The ENT doctor said after the operation: ‘We removed your middle ear. Just get started with a hearing aid.’ A second operation follows and her hearing on the right proves to be irreparable. Finally, after another pregnancy – which ends in a miscarriage – she also develops cholesteatoma in her left ear. A tough time. Almost four years later – after her third operation, this time on the left – she was pregnant again. After the birth of Puk, the invitation for the MRI was soon on the doormat. The outcome? Cholesteatoma again.
Esme was successfully operated on as a 19-year-old for cholesteatoma in her right ear and when another operation was needed, it seemed that the matter was over. In the ten years that followed, she went through the checkups flawlessly until she became pregnant with her first child through an IVF process. Estrogen is one of the ingredients of hormone treatments. Esmé: During the pregnancy I had no problems, but after Maeve was born my hearing became restless.” There’s no doubt about it for Esmé: The same hormones that spurred her uterine lining to grow also stimulated her cholesteatoma tissue. The package insert of the IVF medication even includes a warning about otosclerosis, a condition similar to a cholesteatoma
Call
The cholesteatoma committee of Hoormij∙NVVS likes to get in touch with women who recognize themselves in the story of Kim, Janneke and Esmé. Are you (or were) you pregnant and did you suffer from hearing problems? Think of hearing loss, dizziness, a running ear or pressure on the ear. Send an e-mail to [email protected]. If there are 20 women with a similar story, that is reason for scientific research.