The Power Of Twitter & EndoSisters...

The last year and half has been a rollercoaster to say the least. Both physically and mentally. For the majority of it, I went through each day thinking I was going mad. That the pain must have been all in my head because every single test that I had done came back clear. The only obvious result I felt was I getting was that I was going insane. Confusion was an understatement and even to this day there is still a lot of it around. Confusion from doctors not knowing what was causing the pain, ignorance from other doctors not believing I actually did have pain, confusion from test results, from wrong diagnosis and from myself. Just not knowing what to do for the best. Who to go to next for help. Trying to convince myself that what I was experiencing wasn’t ‘normal.’ That I didn’t just have to put up with it. So I spent endless time googling symptoms (…bad idea). Although I still do it now - I cant seem to stop myself! I think I may have a slight addiction.. Free Advice: Trying to self diagnose when your not feeling well and in an emotional state that endo puts you in is not a good idea!! I learned the hard way! Eventually the laparoscopy went ahead and confirmed I had endometriosis. So what was I meant to do now? How would this affect me? My life? How am I going to feel? Happy I knew what it was, saddened by the fact it was endo. Confusion strikes again. I don’t think I’ve ever had so many questions running through my head at once, to which I didn’t know any of the answers. Totally not in control of it and I didn’t like it. It frightened me.

So I turned to twitter. I had been using it for a while before but decided to make a new account. My aim was perhaps a bit selfish to start off with. To start an online diary of my day to day life with endo, how it was affecting me, how I was coping. I also wanted to raise awareness about endometriosis. So many people I talked to had no clue what it was. And if I’m totally honest, neither did I until I was diagnosed. I didn’t know if I would get any followers or if anyone would be in the slightest bit interested in my tweets about endo but I’ve never been so wrong. I have met and talked to some amazing women that totally get how I’m feeling. If I don’t feel the best I only have to put one tweet on and almost instantly I’ll get a reply. If I need advice about symptoms, medicines, tips on anything then the women I’ve met are so open they will tell you all that they know and try and help in anyway possible. Its unbelievable how supportive total strangers can be yet I feel I’ve known them for years. I think it’s because you can say exactly how you feel without being judged. Even on my worst down days when the pain is unbearable and at some points I just want to give up, my endosisters can just say ‘I understand’ or ‘I totally know how you feel.’ Other people can relate to you so much but they don’t actually understand the pain and emotions you go through daily. I never knew by having people on twitter who instantly knew how you’re feeling would help so much. Make me feel supported. That im not going mad after all. Mainly make me realise that I’m not alone. The endosisters I’ve met are so inspirational that even on days when they too may be feeling awful and in terrible pain, they still have time to ask how I am, crack a joke or even share the tears. Many nights I have logged onto twitter with tears strolling down my cheeks and by the time I’ve logged off I’ve been laughing my head off and still giggling later on that day over something we’ve talked about.

So really, I just wanted to thank each and every one of you that’s asked how I am, made me laugh, cried with me, given me advice, tips and support. I've said it many times but setting up this endo twitter account is the best thing I have ever done. It’s made me feel normal again. So thank you so sooo much. I’ll be forever grateful and here to help in any way I can if you ever need it...x

 

#MyEndoDiary