What it’s like living with Endometriosis.

For anyone who follows me on instagram or has me on facebook or knows me well enough… you will know how completely honest and open I am as a person and this applies to my chronic illnesses too.

I use my social media presence to raise awareness of these health issues as I think it is important especially when so little have heard or speak of them.

I do this from a very personal perspective as I think this is most effective.

Anyway… I’ve decided to write this today to help raise awareness of what it’s really like to live with Endometriosis.

But firstly…

What is Endometriosis?

Here are some links for further reading:

https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656

https://www.nhs.uk/conditions/endometriosis/

https://www.endometriosis-uk.org/

https://www.nhsinform.scot/illnesses-and-conditions/sexual-and-reproductive/endometriosis

https://www.bupa.co.uk/health-information/womens-health/endometriosis

https://www.rcog.org.uk/en/blog/10-things-you-should-know-about-endometriosis/

What is it like living with Endometriosis?

1. Constantly being in pain every single day. How much pain depending on where you are in your cycle, how tired you are (if your more tired than usual then your pain tends to get worse and pain tolerance gets worse). Trying to hide it every single day from people and act like a normal person…whatever normal is.

2. When being asked if your ok either denying the fact your in pain and act like your ok, or figuring out what to say to them- either to openly disclose that you have Endometriosis which 90% of the time people don’t know what that is and you have to explain it and watch their faces drop, expect a blank expression and equally disappointing response or just lie and say you have a bad back, cramps etc.

3. Taking the strongest pain killers the doctor will give them and taking them on a regular basis. They make you feel more tired, irritate your stomach and digestive system and barely take the pain away but if you don’t take them you can’t even get out of bed. People looking at you or thinking your a drug addict because of the pain killers your taking and how long you have been taking them and again the awkward discussion if they ask you why you are taking them. When your especially tired the pain killers making you feel trippy, zoned out and out of it, but still not helping with the pain.

4. Constantly struggling to find something to wear as the slightest bit of pain, flare up or upset stomach swells your stomach up to make you look 4 months pregnant which is ironic considering Endometriosis makes it very hard to get pregnant. Having to hide your stomach, then having to explain to people why you’re wearing baggy clothes all the time- I’m not a slob honest, I have nice clothes!! The rare day my stomach is ok I wear them.

5. Some (not many) women trying to sympathise with you (which is appreciated) by saying “I get painful periods too!” Please please please, never say this! Endometriosis is so much more than a painful period and we would kill to just have pain during our periods or to have a normal amount of pain like everyone else.

6. Constantly spending what little money you have on hot water bottles, cbd oil, heat pads, sweat pants, PJ pants, harem pants, toiletries…. anything to both try and help us with the pain and to make our lives a bit more comfortable and bearable.

7. Owning more PJ pants, harem pants and sweat pants than normal clothes.

8. Constantly feeling tired! Being in pain all the time absolutely takes it out of you, the majority of the time your ok as it’s a normal part of your life and you get used to it but like everything it gets on top of you. You have your days where you struggle to stay awake, to gain the energy to get out of bed and function to do normal day to day activities because all you can think about how tired you are and this is normally when the pain gets worse too and it’s all you can think about. The fatigue not only makes you feel tired but gives you back ache, headaches, sensitivity to light, eye ache, your muscles in your legs, arms and everywhere else hurts and your body genuinely feels heavy.

9. Back ache, back ache and more back ache. When does our back not hurt? Despite age our backs hurt like we are old age pensioners. It ranges from just a dull ache, to shooting pains to full on struggling to bend over pain and again tiger balm, deep heat, heat patches and hot water bottles are our best friends.

10. Constantly wondering what people think about you and say about you behind your back- do they understand my condition? Do they think I’m being over dramatic? Do they emphasize? Do they take the mick out of me for it? Are they tired of me talking about it? Do they think I’m weaker because of it?

11. How does endometriosis takes a toll on your mental health? Well, you don’t have good self esteem with a constantly swollen stomach and struggling to find something to wear, it’s literally exhausting being in pain every day and pretending everything’s ok and its mentally hard to have to explain it to people, watch them misunderstand you or plain hide it from people. It’s even harder trying to be diagnosed… going to the doctors repeatedly telling them your in pain, telling them of your symptoms for them not to take you seriously, to then having a keyhole surgery to get diagnosed and then another waiting game just to know whats going on in your own body and how to live with it for the rest of your life as its incurable and figure out whether you can have children or not.