Hello Villagers! It's time for another entry in our series of awareness blogs and, carrying on from our Chronically Creative entry focused on endometriosis from last week, we've been joined by Natalie (@justaspooniegirl)! Natalie is a long-time endo sufferer who only recently received a formal diagnosis, and she's been kind enough to give us an insight into exactly what it's like to live with her illness. So without further ado, we'll hand over to Natalie and her story!
My name is Natalie and I am 26 years old. I was diagnosed with endometriosis via laparoscopy in February last year, after a long 10 year battle.
I've been misdiagnosed with everything from IBS to anxiety and my pain has been ignored and push aside by others for years. I was originally diagnosed with an under active thyroid but when I was still complaining of pain and fatigue they simply told me that there was nothing else wrong. I had my diagnosis, I now had to get on with life. This was extremely hard, as I felt so weak and so ashamed that everyone else was just getting on with life and yet I found it so difficult. I thought I was just lazy and that I was making the pain up in my head. There was nothing physically wrong with me, I’d had all the tests and they always came back normal. Doctors would sigh and roll their eyes when I tried to explain that something still wasn't right. Other people would tell me to 'just try harder, everyone gets tired, we just have to get on with it.'
So I did. For several years. Until I started experiencing really bad anxiety and was having panic attacks every day. I just didn't have the energy for life and I didn't know why. I couldn't understand it and neither could anyone else around me. Boyfriends would laugh at me for not being able to do anything when I was on my period. They'd tell me that their ex girlfriends used to just carry on so I must have a low pain threshold as I found them so debilitating. I pushed through and tried to just get on with it. It then got to the point where I couldn't work, or walk, or even stand up as the pain was so bad.
Eventually, my mum, who had endo when she was younger but has since had a hysterectomy, said I looked how she did when she was suffering with endo. She had been told by doctors that endo is passed down from the father. So even though it was genetic, it would be unlikely that she would pass it on to her children and that it would have to come from my father. She thought this was unlikely to happen to both of us which is why she never thought about it before. A doctor had told her this, so she believed it. I started looking into endo online and I had all the symptoms. I went back to my GP and suggested it and was referred to a gynaecologist. They told me it might not be endo as my pain was constant and endo tends to be cyclic. Finally, I had the surgery and they confirmed stage 3 endometriosis with a lot of adhesion's, cysts and endo on my bowel. They lasered off what they could and tried to loosen up the adhesions.
I was relatively pain free for about two months until it returned. Now I am in constant pain again and can spend weeks completely wiped out from a flare. I am trying different ways to manage my endo at the moment such as diet, massage and soon I'll try acupuncture. I am waiting to see a gynaecologist again in the hope that they will perform another surgery. It's crazy to think that if I hadn't suggested it to the doctor, I still might not have a diagnosis. I had to fight to be heard and in the end had to figure it out for myself. It shouldn't be this way. Doctors should be able to recognise it or at least be willing to refer us to someone else that could identify it.
Endo affects every aspect of my life and it can make it hard to make plans as I never know how I will be feeling. I could seem relatively healthy or I could be completely wiped out from a flare and unable to get out of bed. I don't let it stop me from living my life, but I have to be cautious with what I can and can't do. There is no point in thinking that I can just fight it and try to do everything. I have to live with this, so I need to manage it sensibly. I need to make sure I take rest days, and that I don't plan too much in one week. I need to give myself time to recover and have to take time to try and ease the pain. I find heat helps so heat mats and hot baths are essential. I run out of energy really quickly so I now tend to take a walking stick with me wherever I go. Sometimes I don't need it, but I've found it to be so useful when I do. It makes life so much easier just having that extra bit of support.
It's hard to live with both physically and mentally. But having a community of endo sisters sharing their own experiences and advice has been amazing and makes you feel less alone. You know that your pain is valid and that there are others who are experiencing the same thing. Honestly, it makes you feel a little less crazy! It's important that we all keep raising awareness, for each other and for the girls of the future. If we can start making changes now, then they might not have to suffer like we did.
Once again, huge thanks to Natalie for such an honest and frank account of life with endometriosis! We'll be back at the same time next week with the next entry in our Self Love Society series! Have a good week and see you then!