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 tuned 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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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.

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When you have endometriosis babies seem to be everywhere

It’s time for confession. Unlike many of you, starting a family has never been particularly high on my priorities list. It wasn’t really so when I was healthy, and I suspected a desire would leap out from somewhere when my fertility started to come under question with my endometriosis diagnosis – but it didn’t. I stayed calm. There was no urgency to try and conceive, there was no desperate sorrow that I know many of you face each day.

I sort of welcomed the finality of a door being potentially closed.

Seeing all these new arrivals, all the excitement leading up to other people’s new children. Even though it’s not something I want for myself (possibly ever). A part of me I can’t place still feels sad about it somewhere. Not enough to make me want to do something about it, just enough ambivalence and turmoil to remind me of what I might or might not be missing out on because of illness.

It’s time to deconstruct this feeling I am feeling.

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We need to talk about chronic pain more

Recently I was sat around a dinner table with some visitors, and someone there was trying to share their experience of living with incurable pain.

This took a lot of bravery to do in such a social setting, and being in pain myself that moment I was listening intently to their story, when someone else quipped that this person was “going on about their pain again” and “no one wanted to hear about it”.

I corrected the person, and explained that I did indeed want to hear, and it was very important to listen to stories of pain, as I lived with chronic pain myself.

Isn’t it interesting that pain forms such a huge part of our lives, but years of societal conditioning has told us that it’s something we have to carry quietly?

I completely disagree.

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Endometriosis immune system problems are making me miserable

After about five years with endometriosis my immune system feels pretty weak. Historically put this down to my body having to constantly fight the effects of chronic pain and fatigue, but as time has gone on, and each year I break my own record for the number of colds caught, I’ve started to wonder if there was more to my colds than plain bad luck.

If you practice good hygiene, have a good diet, exercise and avoid activities associated with higher cold risks (e.g. smoking) why does it feel like we’ve gotten the short end of the stick when it comes to my immune system and endometriosis?

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Working with chronic fatigue

Working while fatigued is real dichotomy. There’s plenty of information about living with chronic fatigue out there, which proposes using phases of pacing and rest to get activity done – however that’s easier said than done for those to us who work (particularly full-time) who do not have adequate options to rest in the day.

Yes, we’re meant to rest wherever possible, but being realistic, we have bills to pay and people to look after. So fatigue management is a even bigger balancing act when you work, it’s impossibly hard some days and it’s the element of my life that I find the hardest. Chronic fatigue of course is totally different from tiredness and needs to be treated differently.

Work by definition often means pushing yourself, and even a healthy person feels tired and worn down after a work day, so trying to work with the limited amount of energy afforded by a chronic illness, while trying to maintain professionalism at work remains a massive challenge for many of us. There’s no hard and fast rules that will solve this problem, but I hope to pass on some of the tricks and coping mechanisms that help me each day.

The key is to find something that helps a little – to help you find a way through the day. Once you find a study foothold with chronic fatigue, then you can continue to climb.

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Are you the youngest ill person in the room?

I feel like I frequently am.

Whether it’s at healthcare events, support groups or consultant waiting rooms. I’m usually the odd one out, the person who is “too young to be sick”.

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How others can talk about how we live with illness

It’s amazing watching the change in someone when I explain that I am chronically ill. There’s a subtle change that happens. Small enough for someone else to miss, but I’ve seen it often enough now that it seems so obvious to me now.

It’s part of the negative side of having an invisible illness. It’s something that people who are well will suggest that I should count my blessings for, because I can somehow hide my illness around me like underclothes, and present it only when I want.

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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

  • Turns out all the coping strategies for managing with chronic fatigue are great for jet lag. Pretty much back to normal after a day :) 13 hours ago
  • RT @MCHypnosis: Do you suffer from endometriosis? If so please could you answer this brief survey? lnkd.in/dR3jNRs many thanks. Mark. 1 day ago
  • Planning on getting over the jet lag by sitting down with one of my favourite shows; Twin Peaks. How are you all doing today? 1 day ago
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