Looking for help with endometriosis?

Welcome! I’m Michelle and I’ve lived and worked with endometriosis successfully for seven years, and so can you with the right help. If you’re newly diagnosed (or waiting on diagnosis) here are some good places to start:

Endometriosis is hard work, but you can claw back some quality of life with the right support. Talk to me, I’m here for you.

 

The three types of people who don’t believe you’re in pain

A departure area in a Japanese airport.

This is a lesson I learnt very early on in my endometriosis diagnosis. It started when the pain started, I knew something was wrong, but people started to try and explain the pain away.

I’m reminded of it again with the diagnosis of my second condition. Living with people who are not unwell can be exhausting, as exhausting as the pain sometimes.

I explain what living with chronic illness is like when it’s worth it, but on the whole living with illness means picking your fights with people carefully and largely muddling on through everyone else’s healthy status quo.

Here are what I think are the three types of negative reactions to disclosing your chronic illness.

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Endo what film review: a triumph for endometriosis patients everywhere

Endowhat trailer image - a young ballet dancer in silhouette.

I’d been anticipating the arrival of Endo what for many months. Back when I donated to it on Indiegogo I hoped it would go some small way to explain the difficulty of living with endometriosis. I couldn’t have imagined that it would hit each of the notes and nuances of endometriosis so perfectly.

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Why do people in pain turn up at A&E?

Beautiful black and white graffiti from Japan.

I’ve seen a lot of in the press and on social media in the last few years about how people shouldn’t turn up at Accident and Emergency (A&E) for illnesses that are not emergencies.

However I think people in chronic pain or with long term illnesses have been all but forgotten in this rhetoric. I’ve never gone to A&E myself, but I know many people in pain that have, and their stories all share one thing in common – they went there out of total and utter desperation, and I am utterly sick of them being demonised for doing so.

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Guest post: The worst time of the month

One of my readers asked if I’d like to share her story as part of endometriosis awareness month. She shares a powerful story about working with endometriosis that we can all relate to. Thank you for sharing your experience Grace.

An empty bed in a hospital.

 

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It’s not me talking, it’s the pain

A cosy cat warming on christmas lights stretches out a paw to the camera.

This is a phrase I hear all the time – from me and the many women I talk to with endometriosis. It’s the phrase I’m crying out in my head when I say something I don’t mean to.

It sums up my frustration really. As we all grapple with the conundrum of what bits of our personality are ourselves and remain ourselves, and what’s caused purely by pain.

Pain is usually all I can think about now. I spend most of my time distracting myself from it and as such it feels like the pain is sometimes in control of how I say things. Thoughts often leap out of my mouth before I can filter it.

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Why pain free days are weird

Man trying to ride a bicycle with his head bandaged up.

If I had to estimate I’d say that I am in pain 95% of my waking hours.

Most people I know are shocked by this, but pain is my new normal. What’s unusual for me now are pain-free days. I average about four to five pain-free days a year. Not being in pain is weird. Not horrible, just weird. I’m not so much relieved about the pain being gone as worried about when it’ll come back.

It’s something I hear a lot from friends living with chronic pain, but it’s not an area of chronic pain many people talk about.

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We are not to blame for our long term illnesses

A photograph of an ancient asian scholar in the British Museum.Acceptance is an important part of living with chronic illness. Part of acceptance means realising that you have to put aside your feelings of “why me” aside so you can begin to appreciate what you still have rather than mourn what you’ve lost.

In the first few years of diagnosis (and even after then) many people will approach you upon hearing that you’re unwell with their suggestions for what might help or solve your pain or fatigue.

I still consider it the height of arrogance to approach someone who’s been unwell for years with a simple or quick fix. The reality is that no one really knows the causes of many chronic conditions, so by that logic no one can easily solve the issue without knowing what caused it in the first place. It’s well meaning but sort of implies you’re ill because you’re not doing something right — when in reality, you’re trying your best.

Your illness is more than likely something you were born with, or something that you have a genetic disposition for. You just got unlucky that it was activated at a random point in your life.

You’re not to blame for your chronic illness, and here’s why.

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Getting a diagnosis of a second long term illness

Everywhere I experience chronic pain.

Everywhere I experience chronic pain. Endometriosis in red and JHS in purple.

Earlier this month I got a letter from a rheumatologist confirming that I had Joint Hypermobility Syndrome (JHS). This is the second long term condition diagnosis that I’ve received. My first was my diagnosis for endometriosis in 2009.

It didn’t really come to a surprise for me to discover I had another long term condition, because I’d been experiencing pain that didn’t quite tally with endometriosis for quite some time (almost two years). However it was getting worse and I didn’t know how best to manage this new type of pain.

Not everyone with one long condition will go on to develop a second or third, but some of us do, and I know what you’re thinking, “I can’t manage with one long term condition, how could I manage with two?”.

It’s rather like your first diagnosis to be honest – you don’t have a lot of choice in the matter.

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How to get a good nights sleep

My two cats Ada and Curie having a nice nap together.

My two cats Ada and Curie having a nice nap together.

Before I got sick I battled with insomnia for many years. It started with living with several extremely noisy housemates at uni that meant what little sleep I did get had to be managed around what quiet time they’d let me have.

Over time this led to such anxiety with getting to sleep that my mind whirred as I tried to rest, so although I’d regularly be exhausted I couldn’t get any rest at all.

I felt powerless about something that should be effortless, and when I became ill with endometriosis (and started full time work) it was one of the first things I had to sort out to get some quality of life back.

Happily I’ve lived with near perfect sleep since becoming ill, it’s one of the few areas that I don’t have much difficulty with anymore. Although much of my sleep can still be unrestful (and I have wider chronic fatigue problems).

That said, I didn’t quite appreciate how restorative my sleep was until I got a new set of neighbours that caused me several days of restless nights and I got flashbacks to a time that I’d all but forgotten about.

I know some of you must still be in the worst throws of insomnia, and I know how utterly miserable it can be so I’ll do my best to share what has helped me get over that particularly horrible hurdle.

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Endohope

My name is Michelle and I've been living and working with endometriosis for seven years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease. You can read more about my story on my about me page.

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  • Another X ray and another test next week for another new symptom. You'll know more when I do. 2 hours ago
  • Endo presentation went well - but not a brilliant turn out, had several people approach me to talk who were too scared to come though :) 1 day ago
  • Think I've got everything ready for my talk tomorrow, happy with what I'm covering, just need to test the presentation works :) 2 days ago
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