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.

Continue reading

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).

Continue reading

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.

Continue reading

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.

Continue reading

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.

Continue reading

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.

Continue reading

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.

Continue reading

I’m taking part in the Million Woman March for endometriosis in London – come say hi

Million Woman March UK poster.

Hello lovelies.

Do you have endometriosis and are you based in the UK? I’m hoping if so that you’ll be attending the Million Woman March for Endometriosis on the 13th March in London.

We’ll be doing a peaceful march around Kensington Gardens to help raise awareness of the impact of endometriosis. This will coincide with marches all over the world culminating in a million women marching for endometriosis awareness.

If you are coming along, do come and find me and say hi. Come and tell me your story, come get a hug, or just march alongside me. I’ll be wearing an @endohope name necklace and you’ll make my day :)

There’s a piccie of me on my about page if you want to seek me out on the day too.

You can find all the information about the London event here, and register for the event if you want to take part.

There’s information on how to take part if you can’t make it. We all have our part to play in this event, hope to see you there.

If you’re in pain all the time, why don’t you just take painkillers?

Every so often something will happen to make you review your current treatment and circumstances.

For me it was a series of heart flutters and painful heart palpitations as I tried to work a couple of weeks ago. As people with long term illnesses we have to way up our current quality of life with pain against our long term health all the time. It’s done thing that most people take for granted, taking medication that simply works in the short term with no ill effects.

I’ve had a number of people this week (people who know me fairly well) no less ask me with genuine sincerity:

If you’re in pain all the time, why not just take a painkiller?

In their world maybe pain = painkiller is a simple no brainer, but it simply isn’t always like that in mine.

Continue reading

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

  • There's a piece on Woman's hour about young women with cancer, and how it ruins your life plans. This all sounds so familiar. 12 hours ago
  • You never see a cyclist say how tired they're feeling after coming into work. I always feel better once I've cycled. 13 hours ago
  • This is the sort of summer we used to get :) Really helping with both pain and mood. 1 day ago
Follow

Get every new post delivered to your Inbox.

Join 1,144 other followers