To honour the end of endometriosis awareness week I got thinking about how and when endometriosis came into my life and how I managed with terrible periods for over a decade.

I remember one occasion many, many years ago when I had to leave work, and my (female) boss looked at me accusingly and said “You’re not going home because of your period are you?”.

Her tone said to me that she found that idea pathetic. I lied and said I had a tummy bug so I could get home without stress. I was young, and tired and not in the mood to start the debate about periods as I would now.

But that question stuck with me for many years, right up until my endometriosis diagnosis. It’s a burden that many of us live with right up until we’re diagnosed.

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I was recently approached by a Journalist called Stela Todorovic who wanted to write a piece about endometriosis. I look forward to the piece, but I thought in the meantime you all might benefit from the answers I gave about what my diagnosis was like and the experience of being treated in the UK.

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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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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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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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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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