14 March 2018

Heavy menstrual bleeding made me afraid to leave the house Jillian Neckar, Co-Leader of the Central London Endometriosis Support Group

Jillian shares her experience of heavy menstrual bleeding (HMB) and how she hopes the new NICE guidelines will improve treatment for women like her.

Image of Jillian Neckar

When it comes to periods, who really knows what normal means? It’s not something you talk about with your friends, unless it’s an embarrassing story or a light hearted complaint. And what should you do when your period is so heavy that it starts to interfere with your life?

I am one of the “1 in 20 women who consulted their GP about heavy menstrual bleeding” after years of suffering in silence.

My first period lasted 12 days. As I got older it got heavier until I was bleeding for 14 days every 28 days; half of every month.

The blood loss resulted in severe anaemia (where your body doesn’t contain enough healthy red blood cells), which caused fainting. The cause of my HMB wasn’t investigated, but I was offered some hormonal treatments to try and get the bleeding under control. They didn’t work, unfortunately, and I was left wondering what to try next.

Aside from the medical implications, HMB has caused me a great deal of embarrassment. I had to go to the toilet every hour to change my protection. I didn’t go swimming while bleeding for fear of leaking. I didn’t wear light coloured clothing, or nice underwear. I even avoided going out the house, because of the fatigue, pain and fear of bleeding through my clothes.

Eight years ago I decided to try the IUS device and I finally got my life back. I still live with HMB, with my period averaging 14 days that can go up to 22 days. However, the IUS has meant that blood loss is reduced and that I have control of my life: I can do what I want to do, wear what I want, and not worry about having to run to the toilet every hour. My HMB also lead to investigations that revealed I also suffer from endometriosis, which I am now being supported with.

I am excited to see that NICE has updated the guidelines on HMB. The guidelines emphasise the importance of talking to the woman about her needs and giving back control. They also recommend investigating the symptoms and cause of HMB so that women can find answers and select the right treatment for them.

2 comments

  • The management of endometriosis is included in separate NICE guidelines not this one. I'm surprised NICE doesn't know this. Also NICE doesn't appear to know the number of current diagnoses using hysteroscopy >61,000 NHS Stata not the 5,000 mentioned. Far from Clinical Excellence and UNSAFE for women.

  • Hello, thank you for your comment. This blog post discusses our new guidance on heavy menstrual bleeding and Jillian's own experiences. If you're interested in our endometriosis guideline, please read this blog: https://www.nice.org.uk/news/blog/raising-awareness-of-endometriosis

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