I had my consultant last week to discuss going forward as I'm now three months post op. The appointment was different this time it was one that I actually felt like I was being treated like a human being. The consultant took a holistic approach and looked at how things are and how endometriosis is affecting me. She went over the notes Dr M had left and what his recommendation for next steps was. She checked results on TRAK as a few samples were sent away and also notes from having to go to out of hours when the GP surgery was
closed. Dr M recommends that we go forward by doing more surgery. I must admit that when this was put forward I did feel quite scared but I knew this would be something that would be discussed because when I saw Dr B the week before she had told me about the letter that was in my notes and what they were looking at for going forward so I did sort of feel prepared to have the conversation. The consultant turned around to me and said; " I'm sorry to hear how this is affecting you and that your having to go through this." She explained how they wanted to do an MRI scan first something to do with superficial and deep endometriosis or something. There's so many issues endo is causing and they're really disruptive and hopefully with the surgery it will resolve things. You'd think with going through surgery again the prospect of it wouldn't seem as scary but it still is. I got a letter explaining everything they discussed in that appointment because it was a lot to get my head around. The letter in some parts is quite overwhelming but I know that I need to be fully informed on risks and complications that could occur. They've told me though that this may not actually resolve the problems but create more issues. It's hard being in two minds over whether it's worth the risk or not. But they did say that if we did nothing then it would just get worse over time.. I think I'm going to discuss the letter with one of the GP's because it is a bit wordy and getting some sort of reassurance might be a good thing. I didn't think I'd have to go through all this again and I don't think my family did either. They thought one surgery and it would all be "cured" just like that. It's hard though trying to get some of them to understand. I suppose it's more about giving them time to understand because I can't really do anymore to make them understand it. One of the endo girls knitted me a bear for awareness month and my mum has been calling it "The Endo Bear" so she's trying her best to learn more about the condition. The one thing I really want is my life back. To not have to worry about what foods I eat in case of a flare, to not have to feel like I'm alone in this because everyone that has endo in real life that I know is over the age of 30. How good would it be to not have to worry about when infection like symptoms start and getting on top of them with antibiotics asap and not have a heart rate of 109 when I'm going through a flare.
The frustrating thing is a lot is happening at the moment with me preparing to move into a new job and having all this happening at the same time is just annoying because it means speaking to my new boss when dates for appointments and surgery come through. I'm hoping she'll be understanding about it all as I don't want this illness to get in the way of me being able to support others because this new job has been the one thing I've stayed positive about and nothing will be getting in the way of that. I had plans for this year and my goal was to go to uni and do my nursing but I'm going to have to put that on hold again. It's hard watching people moving forwards in life then there's me stuck with endometriosis which is just frustrating. I don't know what else to say because I just feel so sad and angry.
My biggest fears about all of this is ending up on more medications than I'm on at the moment but I do know that the medication is what's helping me manage the pain etc. There's more talk of using hormones and as soon as I read that I just instantly think no. I've tried so many different hormones over the years and they've all caused horrendous side effects and caused things to go downhill in terms of mood and it's just ugh and it's up to my GP to try and help pick up the pieces.
Surely it's okay to say that I'm tired of this and just want a break...
