We deserve better.

This week I’ve realised just how much things need to change as there just seems to be no clear pathway for women with Endometriosis when attending A&E. I’ve not been doing great these last few weeks and my GP made the decision to send me up to A&E after assessing me and deciding I needed to be seen. I felt the student nurse was the only one who really listened and seemed interested. I have a feeling it’s because the label 🏷“chronic pain” is in my notes this is used for almost everything. The doctor made the decision that since I’m having surgery in August they could review me then and insisted I’d be better at home with painkillers which I was already doing in the first place but this was doing very little. I have a feeling that this is endo causing problems I suspect something is stuck and that is what is causing all the left sided pain. The one thing I wanted was to be helped and my concerns listened to. 

Just because the obs and bloods are ok it is assumed that you are “fine” when deep down you just feel totally shit. I left feeling even more deflated than I went in. A&E for myself and a lot of other people is a last resort it means everything we’ve tried at home just hasn’t worked. 

 There just doesn’t seem to be anywhere to go when your really struggling with your endometriosis. It feels at times that you are just left to “get on with it.” It feels like you just hit a brick wall because you reach a point you don’t know what else to do and the doctors don’t know either because of lack of knowledge and understanding around the condition. If only they could see endometriosis they would see how hard it is living with such a painful condition and how debilitating it can be. Imagine not being able to do basic things or  function properly. You feel useless because your no good to anyone when your in pain. If it was visible attitudes would change. 

What us individuals with Endometriosis need is a clear and consistent pathway that means that when we attend A&E about anything gynaecological related from the minute we are triaged to then being seen by someone that is experienced to some extent in gynaecology  who will then be able to come up with a clear plan. I feel like we go from pillar to post most of the time. Let’s not forget the staff who go above and beyond when your either admitted through MAU or A&E they take the time to listen and in that moment it feels like someone is on your side and actually wants to understand and do something to help make the situation your in a bit less rubbish than it is. At times it feels like your fighting a never ending battle that’s filled with uncertainty. 

Sometimes you’ve got to really fight to get the right care and treatment you need. I’ve had to do that a lot and sometimes you have to be your own advocate in this. If there’s one thing that endometriosis has taught me it’s that I know my own body better than anyone else. I had a situation a year ago when a so called endo specialist told me my pains were “phantom pains” when I told him I was worried that the endo had grown back. I knew something was wrong because it was having a huge impact on my day to day life but still he wouldn’t listen. I had to persist and eventually got a second opinion and turns out I was right to be worried. If only I was listened to a year earlier maybe things would be different today and it wouldn’t have gotten this bad. I’m not the only person out there who’s been dismissed like this I know there are loads more people out there being told similar things. Instead I’ve decided to raise awareness and let people know that they know there own bodies better than anyone else and if they’re worried about something speak out until someone listens.