Last Saturday I attended the yearly information day about endometriosis hosted by Endometriosis UK. The information day was an opportunity to learn more about the latest developments in endometriosis trearment and find out the latest advice from endometriosis consultants and patients.

As ever it was a neat opportunity to meet and talk to lots of other women with endometriosis. This event couldn’t have happened without Endometriosis UK, so if you were enable to come to this event, please consider coming along next year or supporting the charity through donation or membership.

Please note

I’ve written up an account of the day as completely as I can, just as I did for the 2013 information day and the 2012 information day. Naturally it doesn’t compare to actually being there.

I’ve had to paraphrase some of what the speakers said (I couldn’t always hear everything), so what is written here does not represent the views of the speakers or Endometriosis UK. I apologise for any inadvertent mistakes.

Always discuss any changes to your treatment plans with your doctor and consultant as they know the best treatment for your personal circumstances.

With that in mind, here’s what we learnt on the day.

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Hi everyone,

Just a quick update to let you know that I’ll be attending this years Endometriosis information day in London. I’ll be doing my best to to write up a summary of the information discussed there as I did in 2012 and 2013.

It would be great to see some of you while I am there, so if you have visited my website (and found it helpful) or would like me to write something in particular for you come say hi.

These information days are crucial for finding out the latest treatment information about the treatment and care of endometriosis, and for meeting other women with this illness.

I’m a member of Endometriosis UK, and this yearly information day is run by them so if you can’t make it this year, I really recommend supporting them through membership, or looking at the other ways you can support this amazing charity.

Watch this space for this years information day update, and thanks to Endometriosis UK for hosting such a fantastic support day.

Last week I had the pleasure of attending a Bristol Endometriosis UK support group meeting where the group leaders had arranged a Q&A session with the endometriosis team from St Michael’s Hospital in Bristol. St Michael’s is one of the 30 BSGE accredited endometriosis hospitals, which works specifically on women with endometriosis and support them and their partners with every aspect of the disease using a cross-discipline team.

It was a really interesting evening, the group was supportive and informative, and it was great to be in a specialist endometriosis centre with all the support that location offers. I thought you’d all benefit from reading the information shared at this event.

I’ve made the notes where I can, but I wasn’t able to hear some of what was discussed. So with that in mind, this update doesn’t totally represent the views of the St Michael team or the audience. I have had to paraphrase some of what they said. Some of the questions asked, weren’t actually questions, so I’ve taken a little poetic licence to make them questions so they make sense to you.

Like anything you read online everything is best discussed with your doctor and your consultant as they can see your medical history and your case file, and what may or may not help you.

With all of that in mind, here’s what we heard.

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Hi everyone.

In a weeks time I have a meeting with a number of people from the NHS to talk about what living with endometriosis is like, and what I’d potentially like to see improved about endometriosis care in my county.

Nothing may come of it, but it’s the first real chance I will have to influence some change in regards to how endometriosis is treated in my local area, who knows where it could lead to.

It got me thinking about how this isn’t just about my perspective, I want to adequately represent what it’s like to live with this disease. I don’t just want to talk about how it’s important issue in my area, but a national and international problem that some people in the medical profession are collectively underestimating.

If you could change one thing about how your endometriosis is treated, what would it be? Here are some ideas to get you started.

• Was the information you received up to and after your diagnosis appropriate?
• Have you received any long-term support or care?
• Do you routinely see someone (such as a pain management team or pain clinic) about your pain?
• Does your medication adequately help the pain?
• Have you been told about pain management and pacing?
• Do you feel endometriosis is taken seriously by the people who treat you?
• Have you ever been offered counselling or sexual therapy?
• Have you been given any physical information (such as leaflets, booklets, or website links) by the NHS or other health service?
• Were you discharged from your consultant after your laparoscopies?
• How long did it take for your endometriosis to be diagnosed? Are you still waiting?
• Did you know what endometriosis was before you were diagnosed?
• Was your pain ever played down when you sought help?

Please share your story and send this to anyone you feel would want to raise some issues.