An Open Letter to an Endo Sufferer: Don’t Give Up

Jessica Duffin writes a powerful letter to other endo survivors

Jessica Duffin, woman looking into camera, black and white
By Jessica Duffin, founder of This EndoLife

When I was diagnosed with endometriosis, it wasn’t really conveyed to me as a big deal. I had zero interest in female ‘stuff’ and quite frankly wanted as little to do with my body as possible. I got on with the operation, recovered, and essentially pretended it never happened and wouldn’t happen again.

Society seemed to favour this. 

There was little information, the doctors didn’t seem concerned and no one around me thought much more of it other than ‘women’s issues’ that you didn’t talk about.

my life begun to revolve around these complaints, and the world seemed very dark to me

Fast forward a couple of years later, and my pain came back in one sudden, cripplingly blow. At that point, I was older and wiser, and was more aware of the injustices and prejudices that were circulating our society. I visited my GP and was told to come back when it was ‘excruciating’.

Excruciating came about quickly, there was no slow build up with the return of my endometriosis symptoms. One day they weren’t there and the next, they affected every moment of my waking day.  From fatigue and depression, to stomach issues and bloating, to extreme PMS and agonising pain, my life had begun to revolve around these complaints, and the world seemed very dark to me.

Depression had a steel grip around my heart

A long story including various gynaecologists, scans and a mistake in the admin system resulted in me having to wait over two years to have my second operation. During this time, I was spiralling into a very deep hole. Depression had a steel grip around my heart, my mind was clouded with fatigue and I felt helpless. I couldn’t believe how limited the support was out there. Very few people and organisations seemed to care. I was falling through the gaps, and there was really no safety net to catch me. I hunted online, and found excellent charities, but they were swamped and overworked, and as young ambitious woman who wanted to a better quality of life (rather than fertility being my main concern), I couldn’t fully resonate with them either. I occasionally found a blog that had been started years ago and forgotten about, and there were one or two more established figures who I got most of my information from. But still – it wasn’t enough.

Finally I was signed off from work.

That was when I started This EndoLife – over two years ago and it’s been a whirlwind of highs and lows. It’s not always easy sharing my story, sometimes I have to remind myself that I need support too. But when I get emails or direct messages from women letting them know that This EndoLife is helping them, it lights me up and it makes every low worth it.

The depression and fatigue is the toughest part for me. My pain is unreal and at times I fantasise about cutting my uterus out, but I am lucky that the worst of it only lasts 48 hours each month. My heart goes out to anyone who deals with that level of pain daily, your strength and what you must endure motivates me every time I have my period.

What keeps me going, is that it just has to be better than this and it can be. The reason we are suffering so badly is because society has been allowed to brush endometriosis under the carpet. Honestly, sometimes I lose myself in a daydream about how hard it must have been decades ago when women had to be a ‘perfect wife’ and perform ‘wifely duties’, all the while in agony.In that sense, I feel a responsibility (which I’m glad to have!), to keep looking for answers.

I use various tools and techniques to help me through the tough times.

B vitamins have helped enormously with my depression, as does exercise, yoga and meditation. Don’t get me wrong, there are days when I cry rivers, but I always get back up again. I learnt a hard lesson last year when I drove myself to exhaustion, and of course, lack of sleep is scientifically linked to depression and reduced cognitive function. So this Christmas I gave myself lots of time off, slept a lot, read a lot, stayed under my duvet a lot. It was one of the best things I could have done for myself. Podcasts, books, workshops (meditation, reiki, yoga, etc.) all keep me inspired and help to make me feel more positive when I feel like life with endometriosis is looking bleak.

I don’t believe I have the answer to ‘not giving up’. But I do know what keeps me going –  this irresistible urge to keep fighting for something bigger. Whatever your passion is, that makes it all feel worth it, hold on to that. Whether it’s your partner, your loved one, your children, your job, your faith. Hold it tight and allow that to be your light when the darkness threatens to envelop you. Then use the tools and resources you have found work, to pull you back up, whatever they may be.

The world is paying attention, and I believe that our strength and determination to keep going, fighting, living, will change the lives of generations to come.

SOURCEJessica Duffin