Preop & MRI Results

Today I'm feeling so many different things and it's hard. I had my preop assessment today all was okay with that part as it was just answering so many questions and getting observations done etc. Only thing she pointed out was heart rate was 106❤️ but that was nothing to worry about as it was most likely nerves, pain and medication.  The nurse handed me my MRI results by hand as it was more appropriate than sending them in the post. I was hoping that it would be good news but it hasn't been. The scan showed that there is a thickening of the space behind the vagina and over the bowel. The previous endometriosis found during my first surgery is actually adherent on the bowel. They're having to ask colorectal if they need to be present during the surgery as it may be complicated. One of the clinical nurse specialists was waiting for me after my preop as she wanted to have a proper chat with me. I saw her last night at the meeting but she explained that she'd knew about the results and everything yesterday but felt it wasn't appropriate to mention it to me until this morning. She's my point of contact for any information or advice I need. She has been trying her best to get more information to me but told me there would be an MDT meeting next week with all the professionals and they'll sit down and discuss my case. Processing all this is hard because there's so much information and it's confusing.

I don't really know what or how I should be feeling. I came out the appointment and broke down into tears once on the bus home and then when I actually got home. Disappointed is one word but there are so many more. I didn't expect any of this at all. Sometimes I just wish that this was all one bad dream. Today I don't feel positive at all or like I can fight this. I feel as if everything has just come crashing down and I'm just stuck. I don't even feel like a normal 19 year old anymore because everything is just being put on hold. No matter how much I nourish and try to love my body it decides to bloody fight against me and cause havoc. Today I had to decline a uni offer I got because there's no way I'll be able to move away from home and start a degree with all of this happening and this has made me disappointed because watching everyone else go onto uni and just get on with life is hard as they're able to live life to the full. People don't really know what to say to me - I guess that's okay but I don't know what is helpful at the moment as words just don't seem enough.  It's weird as today I was referred to from my dad as a "fighter as I battled through the first surgery" but am I really because I feel like I've just dragged myself through all this. I told him I can't fight this and I just don't see myself the way he does. Everyone around me probably doesn't know what to say but keep saying - think positive - the worst phrase they could ever say to me today. I remained positive about the MRI results because I was told no news was good news and look what happened. It's hard to talk to those who are really close about what I'm dealing with at the moment. I'm going on holiday 5 weeks on Tuesday with Dylan and it'll be good to live a somewhat "normal" life for a week with no appointments or seeing the faces of different medical staff. I'm feeling quite fragile at the minute. Today is one of the days that I just can't hide how devastated I am by this illness💔😭

Review Appointment

I gave in and admitted defeat last night by phoning my GP to say how I'd been struggling over the weekend with pain and infection like symptoms. The receptionist was so nice and gave me an appointment for first thing because she said they'd rather see me in person than talk over the phone. I saw one of the registrar doctors who was really patient and looked at how they can help me "manage" the pain in the meantime while all the other professionals involved come up with this plan. I briefly explained about over the weekend and just how disruptive endometriosis has been. I finish my antibiotics tomorrow but still don't feel myself. She said the cultures came back negative and that she was certain it was endometriosis causing the problem and playing havoc with my body. We decided to just discontinue the antibiotic use and try and focus on pain control in the meantime. My point was that the antibiotics aren't really treating or doing anything to help with the issue. We talked a lot about pain control and she looked at my current medications. She didn't make many changes but she changed me back to domperidone for antisickness because Cyclizine side effects have been really unpleasant. She has been referring to the "pain toolkit" a lot and has given me a prescription of Tramadol which is a stronger pain killer to take as and when required. All the GP's can do in the meantime is help me manage the symptoms because it's the hospital consultants that are coming up with a plan and what steps to take to manage the condition. She had asked if I worked in a hospital because I was using medical terms when talking about the pain and problems endo was causing but because I hear them so often on the ward it's words that I tend to use😂

I asked about the MRI results and she checked the system for them but they weren't there. There was a letter from 15th of March about my three month post-op review and referral letters. She let me have a look but there was nothing in my record about me actually having the MRI scan. She explained that it looks more than likely that Dr J is taking the scan results to the MDT to be discussed as they're still unclear on which hospital are doing the surgery based on how complicated it may be. I was quite annoyed that there was nothing on the system about the MRI even if there was something that my GP could tell me about the outcome of it. It's not just me that's being kept in the dark it's my GP as well because she couldn't really give me any indication or reassurance. It's okay for consultants to say they'll be discussing this at an MDT but as the patient your the one that's left waiting not knowing what's happening. They could have informed me on what's happening because it's my health and my body. Communication between the hospital and my GP hasn't been the best because after the complications from my first operation the GP wasn't even aware I had the surgery and had been discharged awaiting a review.

I was then asked "So how are you feeling about all of this and how are you managing?" The second GP who's actually took a minute to ask how I'm doing. I couldn't really find the words to fully explain to her but I started off by saying "this is so hard" and she said that she can't imagine how difficult it must be and that I have a right to feel whatever I'm feeling. I had explained that I use Instagram for support and how comforting it can be to see someone write "me too" as it makes you realise that your not alone in this. I said there are a few people I feel I can talk to about it whether it's through email or in person because they actually understand and that insensitive comments that I've had are what makes me want to hide it all away. I told her about how difficult it is being young and feeling like I'm having to put my life on hold. My dad today came to the realisation that this isn't going to go away and I'm stuck with this illness for the rest of my life which was hard to hear because sometimes I just wish this was all one bad dream. You know that does really scare me the fact I'm young and have a chronic condition. The possibilities on how this illness may impact my future and I hate even writing this or when people ask me about it but the possibility of not being able to have my own children. I would never wish endometriosis on anyone. It does make you question a lot of things like what if this was diagnosed earlier would it have caused less problems than what it's causing now. If only the doctors listened to me six years ago instead of dismissing my concerns as normal and being told it's all in my head. I just hope that things start to become a bit clearer soon and I'll actually have an idea of what's actually happening. 

Endometriosis, You are the weakest part of me.

This week has been a challenge. My endometriosis has been in one big flare which hasn't been helpful at all. I must give myself praise because I still managed to attend work despite the pain being bad and having to take painkillers during my shift. I managed to get a doctors appointment and I told her how bad the pain had been and how I'm 100% certain that I have a UTI. I was right and she started me on a weeks course of antibiotics and told me to tell gynaecology when I see them. That's the issue with having endometriosis ALWAYS having a poor immune system. I'm more like body please just bloody work and not make me feel so poorly. I've had the weekend off work🙌🏻 first weekend in three weeks and I've spent it feeling mostly rubbish and sore. Plus I've had to cancel plans to meet the girls for cake and a catch up because of how I'm feeling and that fear of vomiting in pain again.  Pain was sitting at a 4/10 during the day at work it was bearable and I could manage but as soon as I got home from my grandmas my pain score went straight up to an 8. I managed dinner but then an hour later vomitied it back up because of the pain. My stomach has been very bloated and sore the last few days. This has been the worst flare I've had ever since my first surgery which is frustrating and annoying. I've been trying to reach out for support but when I do I get the whole lecture about how I need to "Change my diet and exercise more that'll make me feel better." I could feel myself screaming inside and just wanting to cry because it doesn't improve anything. I've already done a complete change of diet but it has made no difference. I've had some insensitive comments made things like "It's just women's troubles" or "it's life you just get on with it." It's hard enough living with this condition and trying to hold onto working full time as well. I didn't ask to have this condition, I didn't cause it and I can't control it.  Comments like that is what's really making me feel like I need to "hide" away. This illness is the weakest part of me and is making me feel and look so vulnerable. I feel I can only show that side to certain people the rest I just have to put on this face and say like "yeah I can deal with this." It's like I'm having to put my life on hold, I have a conditional offer for uni this year in Dundee but I've emailed and asked if I can meet the conditions then defer it until next year. I really don't want to lose this opportunity all because this illness is getting in the way of everything.

I've been distracting myself so made a video about endometriosis:
https://youtu.be/6z7rBCmxMbI

I've been waiting on my MRI results all this week but not heard anything yet but it might just be because of this MDT meeting arrangement and then feedbacking all this to me. The MRI was okay the radiographer was so kind which made such a difference and she found a vein easily when inserting the cannula to give me an IV medication before it. There's always Thursday at the preop though. I'm so hoping Staff Nurse M is working and she's taking me through the preop again because she was so so nice and actually understood how hard this is. I don't know how different it's going to be because this time it might involve more preparation beforehand as it's a more risky operation this time. I have mixed emotion about the preop because in ways I'm dreading facing it alone but in another way I'm not really that bothered because it gives me more time to actually sit and take things in. I just feel disappointed that it's only been nearly 5 months and I'm looking at more surgery whereas other women are pain free for about a year. The letter I got gave different information from what the consultant did she said I didn't have to stay in hospital but the letter from Dr J says that it'll be a few days in hospital so all this will need to be clarified on Thursday. I know I need to be strong though but I can show my real feelings to those who I know actually do understand.