Six things that caught me by surprise when I was diagnosed with endometriosis

I've really struggled to have the time or the headspace to write a blog these past few weeks, but as Endometriosis Awareness Month has (understandably) been overshadowed by the current pandemic I have made a special effort to mark the last day. 

Before I was officially diagnosed I had researched endometriosis extensively, but nothing can really prepare you for the reality of living with the disease. 

Here are some things that caught me by surprise after diagnosis:

1. Diagnosis is bittersweet

Finally getting diagnosed with endometriosis was such a bittersweet moment for me. It was a relief to know the pain wasn't all in my head and that I now knew what caused it, but it was also devastating to know it is incurable and could affect me for the rest of my life. 

2. Hardly anyone has heard of endometriosis.

It is estimated that one in 10 women have the disease, which makes it about as common as diabetes, yet I still get blank looks when I mention it to new people. 

If you are reading this and aren't sure, read my post What is Endometriosis.

3. If they have heard of it, they know someone who has it...

...and chances are the person they know either 'feels no pain', treats it with a special diet and positivity or is 'cured' after having a hysterectomy.* The thing about endo is that every woman's experience is different, so there is no 'one size fits all' approach to managing it.

4. It affects you in so many different ways

I was pleased to find when researching this blog that the NHS page on endometriosis now lists more than just 'pelvic pain' and 'difficulty getting pregnant' as symptoms. While those two are probably the most characteristic, this disease can affect your whole body, and of course your mental health. It can lower your immune system, cause chronic fatigue and cause anxiety and depression.

5. It peaks and troughs unpredictably

This is one of the most difficult parts of having endometriosis, and I've heard many other chronic conditions are the same. 

One day, you can go about your life and carry out a 'normal' level of activity, the next you are lying in bed in agony, exhausted and blaming yourself for doing too much. Sometimes you can do everything right - eat well, do gentle exercise, rest adequately - and still have a hideous flare up. Sometimes it correlates to your menstrual cycle, sometimes it doesn't. It makes it really difficult to make any plans as you have no idea how you'll be feeling at the time. 

6. It has made me a better person

Before I became ill, I completely took for granted the ability to do normal activities and not be in pain/exhausted as a consequence. I get it, now. 

Having a chronic illness has made me much more understanding and empathetic. I now step back and think about why people might be behaving a certain way, instead of judging them for it. 

By no means am I finished learning how to live with this disease - I think it's a lifelong lesson in adapting, being resilient and making the best of it. It is also vital to have a great support network, to help you through the inevitable tough times - whether that's a significant other, family, friends or an online community. 

I also want to issue a reminder to my fellow chronic illness warriors to look after yourselves as best you can. Right now, the world is all topsy turvy and it's a difficult time for everyone. But two things remain unchanged - you have a chronic health condition, and you matter. Trust me, I needed that reminder as much as anyone today.

Take care, stay safe and stay home if you can.

Sam x

*While a hysterectomy might help some women, particularly those with another condition called adenomyosis, it is not a cure for endometriosis. Currently, there is no cure.