People who have know me a while will know of the years I spent struggling with a rare condition called interstitial cystitis. You have probably never heard of it but any of you reading that has experienced a severe bladder infection will recognise the symptoms I lived with every day for about 12 years.

I was a great person to have around if you ever wanted a toilet stop – I would know or be able to guess where a toilet might be close by. Maybe not the best person to be in the same car as if you want to get somewhere quickly. I lived with pain, needing to access a toilet frequently and often very urgently. I had to get up multiple times a night and the loss of sleep is not good for you health. So many stories relating to navigating the condition that in the end became normal for me – it is amazing what you can learn to live with.

I was a young women with two young children and was given a diagnosis that was basically we don’t really know what it is or how to cure it. It was a life long condition that there was no cure for, only a range of medicines and treatments that could, to a greater or lesser degree, give some relief. I had to learn to live with it, learn to talk about it and make accommodations for it, be open with people so that I could participate in life – some people would be awkward but mostly people want to support you.

In the end the underlying problem was an underactive thyroid, the symptoms masked by the problems with my bladder. After about 18 months taking thyroxine, my symptoms had almost disappeared. I cannot describe how amazing it is to be able to appreciate the simple things in life that others take for granted. Things as simple as taking public transport without thinking twice or planning escape options.

Then I discovered that thousands of women were living the life that I had escaped. Putting up with similar symptoms. Putting up with it without any of the treatments I had available to me, not asking for support because they believed that it was simply a product of getting older as a woman. Putting up with what I had endured when a huge proportion of these women could be treated. Waiting around 7 years on average before seeking support!

It was the reason why Eating Well for Menopause has a chapter on hydration and bladder health. It is the reason we have an on-line course for women about bladder health on the Let’s Talk Food site. It is also why I enjoyed talking with Barbara Bray on her Women Positively Ageing podcast about the topic.

Have a listen and tell me your experiences. Talk about it with your friends, encourage trips to the doctors, keep a diary of the problems so that it is easy to describe.

It isn’t just an inconvenience – it affects fitness, sleep, heart health, can cause isolation and anxiety. While we can “manage” it while we are young and fit enough, without treatment it won’t go away and may get worse. When we get less mobile, these inconveniences can become dangerous – falling in the mad dash to the toilet can be the reason women break a hip.