Pregnancy and otosclerosis

Hi there - I am a 34 year old woman with otosclerosis in both ears - and I am trying to decide if I am brave enough to have a baby, knowing the condition is likely to worsen. At the moment my ears aren't that bad, I don't know my percentage of loss but I don't have hearing aids. Unfortunately my condition is bilateral - and unfortunately my ENT specialist thinks it's started to effect my cochlear too - meaning a stapedectomy might not be an option. So what do I do!?
I would love to hear from any women with the condition who have had children and what happened to their hearing?
Does anyone know might pregnancy make the condition in just my middle ear worse - or will it make the middle ear and cochlear worse at the same rate? (hope that makes sense)
I wonder if there is a specific test or scan I can request to know for sure if my cochlear has been affected?
If I knew the percentage of my hearing loss now - perhaps I could guess my worst case scenario if I did get pregnant?

Any thoughts / stories or info greatly received.

Many thanks
Sarah
  • Hi Sarah,

    I know this post is now from over 4 years ago but I found it whilst googling.

    I also have the condition in both ears and my specialist says it's effecting my cochlear too (based on CT scan images). I'm turning 25 this year and have been wearing aids since 2015. 

    I'm thinking about the future as I do want to have a child one day. I'm worried about the risk of my ears becoming worse during pregnancy and whether it may be best to consider other options such as surrogacy etc. 

    I'm curious to know how you got on after posting this and would love to hear from you and any other women who can relate. 

    Thanks, 

  • Hi Sarah

    Although I too suffer from otosclerosis mine didn't develop until several years after my children were born and my sister also developed it around that same age as me and she doesn't have children so ours doesn't seem to be pregnancy related. (They say cases in the same family often follow a very similar pattern.)

    I can totally understand your fears as I too am at risk of totally losing my hearing and can't have a stapedectomy as I have another condition also that is causing sensory loss. My only advice would be to seek out the opinion of an ENT consultant who has a lot of experience of otosclerosis & pregnancy. In your shoes I'd go to my GP and say I wanted to be referred to an experienced ENT consultant who can give you answers to the kind of questions you need to ask - be specific.

    I hope someone else may be able to give you better advice. Good luck whatever you decide.
  • Hi Sarah,

    Thank you for posting on our forums. My name is Stacey and I work for the information line.

    I am sorry to read of your recent circumstances.

    It would be best to contact your ENT specialist who will be able to offer you advice on your condition in regards to pregnancy. For some people pregnancy can made the condition worse, due to the high concentration of oestrogen during the pregnancy. If you are concerned you should see your doctor or talk your ENT specialist. Unfortunately as we are not medically trained we cannot offer further suggestions in regards to this. You may wish to browse our factsheets and leafets page which has further information on middle ear conditions.

    If you would like to talk to a member of the Information Line team you may contact us with the information below:

    Telephone: 0808 808 0123
    Text phone: 0808 808 9000
    SMS: 0780 0000360
    E-mail: Information@hearingloss.org.uk

    Hopefully other members of the forum will be posting soon.

    Best wishes,
    Stacey