Thursday 12 July 2018

#whatiwishilearned campaign

Endometriosis UK have started a campaign called " #whatiwishilearned " to raise awareness of menstrual wellbeing in schools. I made a post on my endo Instagram account and was amazed at the response and messages I've received of people sharing their stories or those that are in the process of being diagnosed.

 The petition is 300 signatures away from 15,000 signatures so please do sign it๐ŸŽ— : https://www.change.org/p/ngibb-menstrualhealth

It's important that menstrual health is taught in schools. Girls need to know what is normal and what isn't. For years I was told that being in severe pain was "normal" and that " it was part of being a woman." I struggled on but the only things the doctors did was throw painkillers at me and tell me that "having a baby would solve the problem." I mean at the age of 16 and still being at school it wasn't the most appropriate answer. The struggle went on and the doctors kept telling me that "its all in your head" and that "I needed psychiatric help." I knew my own body and knew that my pain was REAL.

I wish I learned what endometriosis was and what the signs were. I still wonder if it was diagnosed earlier would things have turned out just like they have at the moment. There's a lot of "what ifs" with endometriosis and when doctors doubt you I guess you start to doubt yourself. I wish that back then I persisted and demanded an answer. It's weird looking back as all the symptoms and issues was actually endometriosis even though I was told it was IBS etc. I wish I knew that being doubled over in severe pain, vomiting and bleeding wasn't normal at all despite doctors saying it was. 

I wish that I learned about various gynaecological conditions such as endometriosis, adenomyosis and PID. Maybe if we were made aware of these conditions and not made to feel embarrassed or ashamed by the illness more people would speak out and seek help. We have saw stars such as Rosie Marcel, Penny McNamee, Halsey share their experiences of living with endometriosis. Rosie Marcel who plays Jac Naylor in Holby City has also had a storyline which saw her being diagnosed with endometriosis and having to have surgery in the show due to a burst ovarian cyst. This condition does leave scars due to surgeries but....  
“All the best people have scars. You’re even more beautiful now that you’re a little less perfect” ❤️
I wish I learned the effects that certain treatments would have on me both physically and emotionally. I wish that the management of endometriosis was better explained. Most doctors are giving false information such as telling women that a "hysterectomy" or "birth control" can cure endometriosis. It's awful that some women have to be faced with these kind of decisions. It's like being told that going through an "artificial menopause" would stop your pain when in fact for some it doesn't even touch it. Instead you get hot flushes, mood swings, headaches, tiredness etc and the side effects just become too much to manage. 

I wish that the system for endometriosis could change. We are stuck in a system that provides no support or understanding. I wish that the diagnosis process was easier as some women wait years to be diagnosed. There isn't enough emotional support when you need it as being told you have endometriosis is a big thing as you don't know how much your life is going to change but instead your left to go and research and find information out yourself. I wish that us ladies were taken more seriously, we know our bodies better than anyone else and know when something isn't right. It shouldn't be a constant battle in order to be listened to. The one thing that is positive is that you meet loads of amazing women and we all stick together and support each other. Sometimes all we need is just someone to listen to how things are for us. The only people that understand are those that are going through it. It's difficult for someone who has no clue to understand. But us ladies we are warriors and WE WILL RISE. 

I've been meaning to write this for a couple of weeks but things haven't been great since stopping the decapeptyl (also known as the evil drug) due to side effects. I guess that it's ok not to be ok and that self care is the most important thing.Endometriosis has a huge impact physically, emotionally and mentally. The support in the endometriosis community has been great and everyone's so understanding which makes a big difference in a difficult situation.