"I'll rise up and I'll do it a thousand times again✨"

The last few weeks have been challenging. I've felt defeated by this illness so many times and that's been tough. Honestly so many times it's just seemed easier to sink into complete despair. Last week I ended up being sent up to ARU at the hospital from my GP as she wanted me to be further assessed due to high levels of pain and not managing to keep fluids or medication down. I couldn't even sit down in the waiting area because of the pain and I had to ask to go somewhere private because there was so many people in the waiting area who were waiting to be seen and I was in distress and vomiting with people just walking past and staring at me. I ended up stuck on IV fluids due to dehydration, morphine for the pain and IV antisickness. I went for an ultrasound and they discovered I had a kidney stone and that was causing hydronephrosis. I complained about issues with my bladder for ages the GP listened and referred me on but the consultants dismissed it all. They decided that they'd deal with it as an outpatient and because my pain was managed they were happy to send me home with morphine and other strong painkillers. I was glad to get home to my own bed even if I was well doped up. If anyone's ever had kidney stones then they'll know how bad the pain is. I've not heard about dates regarding further treatment but I know I've to go for lithotripsy. The stone has been really uncomfy but luckily Dr S prescribed me a higher dose of the muscle relaxant I was put on at NLU in August and its helping a bit. 

I saw gynae yesterday for the review appointment. I found out yesterday that my consultant is going away on maternity leave which means I'm now under the care of someone else. It's annoying as she was so nice and did listen. She explained about where they found endometriosis and said there was a lot and the bit left on my bowel is small however is too risky to remove. The focus now is to look at the longer term options of how to manage the condition. There's not much they can really do there's the options of just pain management which means being stuck on all these strong painkillers I'm already on or going through a menopause by going and getting an injection every month and taking HRT on the side of that. It's a lot to think about and such a BIG decision. I must admit when this was spoken about I did feel quite deflated because I'm only 20 and being told to consider going through an artificial menopause. A couple of weeks before the women at work were talking about it in handover and they just complained about it and I just sort of sat there not knowing what to say it was awkward.  It was actually a hard conversation to have and brought up a lot of emotion. The first thing people think about is "what about fertility and your ability to have children?" and that just sparks a whole new conversation. The whole baby chat thing I'm just unsure on part of me would love to be a mum but I don't know if I want to have children. I know that as much as I'd love to have a daughter I couldn't allow her to have to deal with endometriosis just because it can be inherited and it's a horrible illness to have. It steals your life away and that's difficult to deal with. I couldn't even go to uni last year because of this illness and it being around surgery time now this year I'm having to give up full time work because it's too much and I'm just not well enough. It's almost like your grieving for what you once had and now you've lost it and it's adapting to that. I couldn't hide it yesterday I admitted I wasn't okay to people when they asked even when my boss had phoned to ask how I was. I couldn't pretend it was all okay as I felt nothing but devastation yesterday. I mean what is going to help me at this time I don't know if prayer would/could do much. The amount of shit this illness has caused has been a joke. I'm not even living I'm just surviving. I don't even want to hear it anymore or how bad it is the one thing I really want is for this disease to be gone. 

"End Endo"

Things have been hard. I must admit. Endometriosis really has had a big impact on my body the last couple of weeks. The pain has unfortunately returned which is what we didn't want to happen. I've been meaning to write a blog post for a few weeks now but I just haven't been able to find the words. The hardest thing about this illness is just how much it impacts your life. I never thought at the age of 20 I'd be constantly battling a chronic illness, on so many different medications to manage pain and other horrible symptoms the condition causes. The endless hospital appointments and surgeries just to try and manage the condition and try and become pain free. I sometimes do wonder though; ” If this condition was diagnosed earlier would it have made a difference to how things are now?“

I know that probably doesn't make a difference but you do wonder.

No matter how hard it is I've learned that with this illness sometimes you have to be your own advocate. It's been hard having to fight for support as well and be the one explaining what is meant to happen with my care. One person that has been my absolute rock this last month has been the Endo Nurse J. I was able to phone for advice and then she spoke to Dr M and got me an appointment to be reseen and helped create a plan on how to manage in the meantime with the appointment being a couple of weeks away. There has been one time when the GP wanted to send me up to gynae triage at the hospital to be seen but I was determined to manage at home. I'm gonna admit though I'm nervous/scared about the appointment to be reseen because I don't know what other treatment options I have in order to manage this and there's a chance it'll be trial and error again. I'd been having a lot of urine-infection like symptoms that has been associated with the endometriosis. The fast heart rates, high temperature, pain, tiredness, nausea and headaches etc. It's been horrible I've had to go to out of hours and be seen by them and put on antibiotics just to try and manage the symptoms. The nurse I seen at OOH on Sunday was lovely and knew a lot about endo. I know that the medics probably see me as one of the 1 in 10 with endo but this nurse put herself in my shoes and her words were quite comforting in a way which is hard to explain. My parents have been great as well, When Im in the middle of a flare they must feel so helpless. It must be hard for them. There isn't much anybody can really do but they just be there❤️ They put up with the tears and all the frustration, keep an eye on me when I'm feeling rubbish, remind me to try and eat something even though I'm not up to having anything due to pain and nausea, taking me to appointments and hospital when needed but most of all trying to understand the condition.

I'm devastated by this illness and the impact it has on my life. I find it so hard knowing that this is something that isn't going to go away and something I'll be stuck with. It's so hard at times not to sink into despair, there are times when all I want to do is cry and that's okay but I know I can't let myself sink deeper than that. There's the things that keep me going like family, friends and the Endo community💛🎗 Some days I'm just too exhausted to fight this illness but I know I must keep going. I know the most important thing I need to do is raise awareness of this horrendous condition and make people aware of it. There's such a taboo around reproductive health and that MUST change. I'm not afraid to speak out about endometriosis I am 1 in 10.