I’m attending the Endometriosis UK information day 2014

My business card with contact details :)

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.

Q&A on endometriosis at Bristol’s St Michael’s hospital

Notice board at St Michael'sLast 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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How to learn a new language while you have a long term illness

I am now several several years into living with long term illness. I’ve come to accept it’s presence in my life, but this has come at the cost of losing a little bit of my independence and freedom. I tried not to be afraid of the pain, but it’s clear that it has affected my ability to live as normal a life as I once did.

My pain started to manifest itself in different ways, I grew more tired, and less able to concentrate and retain things in my short term memory.

As a result I became less sure of my ability to learn new things, I didn’t think I could do something new and complex, because the pain would get in the way, and tiredness would make it hard to focus, and how could I fit it around illness and inactivity and an already busy life.

An then I thought are those actually obstacles for my learning, or am I actually coming up with excuses for why I don’t get on with it? Haven’t I always had excuses for not trying something new? Was illness just a bigger, newer excuse?

So I started reading about learning Japanese, and before I knew it was I was starting to read and write Japanese, I surpassed my own expectations, because instead of wondering why I couldn’t do something, I looked harder at what I could still do.

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What would you improve about your endometriosis treatment?

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.

The problem with “I hope you feel better”

I’m starting to dread these words almost as much as the question “how are you?”. It normally comes not long after I’ve explained how I have a long term illness, how it effects my life and how it’s not likely to improve.

After someone’s suggested something that might help. People tend to wish me on my way with the sentiment “I hope you feel better”.

I know what the person is trying to say, they’re trying to empathise with me and be hopeful about some future improvement in my daily experience.

The problem is though this sentiment is counter initiative to the understanding I have of my illness. Chronic illness is unlikely to improve and can only really be managed by daily management and hardwork. It rarely gives us a break and you rarely experience that lovely, rising sensation of feeling better, of something lifting away.

Despite what the person says, when someone says this to me part of me always feels like they haven’t really listened.

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Why don’t more women have smear tests? Because they really, really hurt

Last month, I replied to a tweet by @talkhealth asking why more women didn’t take up the offer of free cervical smear tests.

I pointed out that there was a very simple reason why one in five women don’t go for a regular smear.

It’s because smear tests can be immensely painful, especially if you have something like endometriosis. I expect that a lot of women are suffering in silence, or find the very idea so painful (due to past experience), they can’t bring themselves to even go.

Having personal experience of truly agonising smear tests that I’ve wept through, I really can’t blame them.

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Endometriosis continues to defy the text books

The most important thing that I’ve learnt about endometriosis over the past five years is that it is a relentless disease.

For those of us who have it, this usually means a increased amount of pain to manage with, pain that seems to reinvent itself every year, finding new ways to baffle and upset you.

Strangely, this is also among the hardest aspects of endometriosis to explain to others. The idea that endometriosis symptoms don’t stay on a straight path. The despite the best efforts of our doctors and consultants the pain spreads and evolves, seemingly against logic.

This is proved by the varied ways in which it can present itself in so many different ways which vary from person to person.

Endometriosis (like life) finds a way (despite everyone’s best efforts).

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Raising awareness of endometriosis on BBC Radio Gloucestershire

Hi everyone,

A heads up for those of you in the UK. I’ve been invited to talk about my experience of living with endometriosis on BBC Radio Gloucestershire on Friday 11th July at around 12:45pm.

If all goes to plan I’ll be speaking to Anna King about what endometriosis is, what it’s like to live with, and what advice I’d give to others with the illness, including what care provisions exist for endometriosis patients my local area.

Edit: You can hear me speaking about my experience with endometriosis on the BBC Radio Gloucestershire website, skip to about 48:43 .


My experience of using the Mirena to treat endometriosis pain

yep does the coil actually work to help with endo and pain i really hope so but doesnt seem like it :'( – Laura Leigh (lleigh6) 19 May 2014

Thanks for the suggestion Laura! Remember anyone can request a a blog post topic using my twitter page.

The mirena is one of those love it or hate it treatments. You’ll hear people singing it’s praises, and you’ll hear people that have tried it and wouldn’t entertain the idea again.

This post is for the lady who sits somewhere in the middle. Perhaps your doctor or consultant has suggested the mirena as a treatment and you’re looking for some insight and personal experience about what it’s like to live with one. You’re keen for some relief from endometriosis pain, but you’ve also heard some horror stories about the mirena, and you’re not sure about it.

I can’t help you to decide if you should have a mirena, but after four years with one, I can impart a little wisdom about it’s positives and negatives. It is like many treatments, not perfect, but if (like I was) you’re desperate for some endometriosis pain relief, it may be worth looking into.

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The importance of support groups for managing chronic illness

I have the immense pleasure of being a member of two support groups. One for chronic fatigue and the other is run by Endometriosis UK specifically for sufferers, family members and friends of people with endometriosis.

I look forward to my monthly meetings with both groups, as it’s one of the few places where I can drop the pretence about living with illness, pain and side effects, and just relax and be myself.

There is a real pleasure with being in the same room as people who understand you, and the very best support groups settings, don’t just provide you with a place to vent, but they are a source of valuable, personal knowledge that your doctor just won’t be able to cover. Of all the things I have used to help me manage endometriosis, support groups ,pain management, and the Expert Patient Programme have been the most useful tools.

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My name is Michelle and I've been living and working with endometriosis for five years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease.


  • About halfway to writing up my notes from Saturday. Hope to get an update up this week, pain permitting. 23 hours ago
  • RT @paintoolkit2: Just back from the bike ride. Bit windy here in Nth ESSEX. Feel relaxed and really helped to keep pain levels down 👍 http… 1 day ago
  • Okay, enough resting. Time to write up my notes from the @EndometriosisUK info day. 1 day ago

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