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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How to travel with a chronic illness

When you’re ill all the time, the prospect of taking a holiday seems like a ridiculous idea. It’s another example of how living with a chronic illness can make our lives seem like the polar opposite of most people. A holiday is a no brainer for most, but to us the idea of a holiday is a awful lot of work. We start the mental list of worries and questions before we can picture the nice time we’ll have. That’s only natural.

Healthy people will take a holiday to escape and unwind, there’s no escaping that something simple like taking a holiday isn’t so simple for us. Illness makes us afraid to try new things, because we’re scared of the repercussions. We start to worry about the likely pain while we’re there, what the payback will be, now we’ll manage in a foreign country. We push it back to next month, next year “when we’re feeling better” and before we know it several years have gone by.

During our worst pain, a holiday is on the long list of things that fall to the side, while we simply wrangle to manage our lives day to day. It’s all very counter productive as the very reasons most people go on holiday are of course great for us too.

When you are ready to travel, I’ve got some advice to share with you.

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Endometriosis & the fear of getting worse

Everything’s gotten a bit derailed in my life since I developed some new endometriosis symptoms. I’ve actually had them for a long time, but only recently attributed them to endometriosis in the last month or so. Now I start the process of trying to get those around me up to speed (including my doctors) with something I know to be true.

Does this sound familiar? This process has taken me right back to my first few weeks with a terrible pain that turned out to be endometriosis, I find myself having to find my feet all over again, and while this has taken me a couple of weeks (rather than the couple of years it took me last time) it was a sharp reminder of how wily a disease endometriosis is.

It feels a little bit like I am on the doors of my diagnosis all over again, it’s a little troubling when you feel like your getting better and someone taps you on the shoulder and suggests actually you might be getting a bit worse.

As endometriosis is a progressive disease (if it’s untreated) we all face the very real fear of this illness getting worse.

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How to support someone with endometriosis

When I tell people I have endometriosis people are shocked about how common the illness is they feel sad that they’ve never heard about it before. As I start to get to know people more long term the best, and most supportive people around me are the one’s most willing to understand what I go through.

I’m happy to say that I am frequently asked what more someone can do to help me with my illness, but there are still plenty of people who don’t ask, or are afraid to ask, so this update is for the people in your life that could stand how to support you more.

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Endohope

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.

Twitter

  • It's not fair, only a 3 week wait to see a shoulder specialist, 3 months to see an endometriosis specialist. 1 day ago
  • A perfect description of endometriosis pain huff.to/1vTXPwy 2 days ago
  • I had to back this, it sums up an important sentiment that's held me together through the last few years of illness kck.st/1tfokOU 2 days ago
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