Menopause and CF: “It's very easy for non-CF specialist healthcare professionals to blame everything on CF regardless of the problem”

My CF doctor told me that there are now more adults with CF than children, which is incredible. I’ve seen amazing advances in CF care over the years and getting access to Kaftrio has changed my life, but us older people can’t just be cast aside because we’ve had Kaftrio and left to manage everything else on our own. While it’s obviously important to focus on getting modulator drugs to the youngest as soon as possible, to minimise the damage CF can do on the body, it’s also important to swing the other way too and focus on the older generation. CF teams need increasing specialist geriatric knowledge, people who can help us manage things that arise in this next stage of life.

The menopause

When I started having hot flushes, they'd wake me up in the middle of the night and I’d have to work out if it was a hot flush, a reaction to the medication, or a hypo (hypoglycaemia: when the glucose level in your blood drops too low). Until I’d done a blood sugar reading, I wouldn’t know what was happening. When I mentioned it to my CF team, they told me it was something I needed to discuss with my GP. I went to my GP and asked if I could be put on Hormone Replacement Therapy (HRT) to get me over the worst of it, especially because I was finding it really difficult with hypos and working full time. The GP immediately refused because I’d had a Deep Vein Thrombosis (DVT), but I hadn’t had a DVT because of travelling or diet, it was because one of my vascular ports got infected; it was very specific to having CF. I went to my CF team about it, and they told me I’d be fine to take HRT but they wouldn’t write to my GP to say so, so the GP wouldn’t prescribe me any HRT.

As we tend to have a CF diabetic nurse specialist, perhaps going forward it would be good to have a CF menopause specialist, someone to act as a liaison on the matter with your GP practice.

When you have CF, you’re sometimes asked all these tough questions about end of life and what you want to happen to you. I'd really rather have a conversation before all that, and I’m sure most women would, about CF and the menopause, and what support you’d like in place for that stage of life. There’s a lot of resources about CF and fertility, but shouldn’t there equally be some resources on CF and menopause?

My top tips for going through the menopause

• If you’re diabetic, make sure you have a reliable alarm and your Libre alarms (glucose monitoring alarm) are on so that if you’re asleep and you wake up sweating, you’ll know if it is a hypo or just a hot flush straight away.
• I personally have found that during the menopause evening primrose oil is very good*. I started taking it because I got really painful breasts around menopause and again, my GP didn’t want to give me anything in case it might affect my CF medication.

*Speak to your CF team before starting any new supplements.

Challenges with growing older

As more health problems inevitably arise, it's very easy for non-CF specialist healthcare professionals to blame everything on CF regardless of the problem. Before the pandemic, I was having lots of issues with my sinuses. I saw my CF team about it who told me it was more of a GP problem, and so my GP referred me to an Ear, Nose and Throat (ENT) specialist. The specialist insisted it was a CF problem and my normal CF drugs would deal with it. I kept having to explain to him that if it was something that could be fixed by my CF drugs then I wouldn’t have the problem at all. I had to wait months to be referred to another ENT centre, where I was diagnosed with chronic sinusitis and needed three months’ worth of antibiotics to treat it, which could have been avoided.

I also developed a neurology problem back in 2014, which was the scariest, most miserable time of my life. I've always felt with CF that I know what’s happening with my body, I understand it and I know that the people who are looking after me are brilliant and dedicated. Neurology felt like a completely different ball game. It took nearly nine months to get a diagnosis because it was so complex, all the medication I took for CF could cause side effects exactly like the symptoms I was experiencing. By the time it was decided I needed an operation to put my neck right, I had deteriorated to such an extent that my hands had turned into claws and if I stood up, I fell over.

This was a terrifying experience and really highlighted for me why it's important for us to build our understanding of what happens as people with CF age, and how to treat and care for us.

CF teams need geriatricians

The most difficult thing for me is feeling like I’m piggy-in-the-middle between my CF team and my GP. With an aging CF population, I’d like to see geriatricians (Medical experts dealing with growing older / ageing) involved in CF teams, getting them to learn from us older patients and more importantly from the CF doctors, nurses and physiotherapists that look after us. They should know what CF looks like as you start to get older. More research into some of the things that affect people as they age, things such as frailty, osteoporosis, menopause... general problems that people experience as they get older, can only be better for the long term.

A big thank you to Jane for sharing her story.  You can read our most recent blog about Menopause and CF here. Visit the NHS page on menopause here, for more information and advice.   

If you’d like to talk to us about your experience with growing older with CF, or CF and menopause, please email us at [email protected]. If you’d like to catch up with our most recent CF Live: Age and CF, where menopause is discussed, visit our CF LIVE page.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing. 

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