"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.

2nd Surgery & Post op

I've been a bit distant on this blog as so much has been happening since the last post I wrote. In August I had my second surgery for the endometriosis. The days before surgery I was scared/nervous as I knew this time round the surgery would be more complex. I had to be in hospital the day before surgery to start the prep and had to be in the ward by 6pm. On arrival everyone was so lovely and my dad took me down to the shop in the hospital to get something to eat for supper as he knew I was fasting from midnight. I didn't have much of an appetite if I'm honest I was mostly nervous about the surgery and I did snack a bit as I knew I had to keep my strength up. The nurse that looked after me that evening was so kind and I had a chat with her as I was feeling a bit emotional and I told her how fed up I was of fighting this illness. I had to have the bowel prep that night and it was an unpleasant experience. It was so uncomfortable and the pain from it was horrible I didn't manage it for long but the nurse said that was okay. 

I had little sleep before the surgery I was finding it hard to relax and the ward was quite noisy. When I got into a good sleep I was woken by the doctor as she wanted to do my bloods before theatre. I was then told it would be best if I went for a shower and got my stockings and gown on as I was first on the theatre list. The clinical nurse J came in to see me as I'd agreed to take part in a research study. The good thing about the endo nurses is you can actually talk to them and you don't have to hide your feelings from them. I found the chat with J helpful as I felt a bit more relaxed and less nervous at this point. 

Next thing I woke up in recovery. I was given pain relief and antisickness medication through the cannula. It was hard to keep my eyes open and I was in the recovery for about half an hour before going back to the ward. I wasn't in that much pain when I woke it was more an uncomfortable feeling as I was bleeding lightly and I had a catheter in. The nurse was a bit concerned as my heart rate was a bit high so they were doing half hourly obs on me. My throat was a bit painful from the breathing tube which was annoying so I kept drinking water to try and get rid of the scratchy feeling. When I was a bit more with it I had phoned my family just to say that I was okay and out of surgery. My parents came to visit a bit later on I was so out of it they were encouraging me to eat something but I didn't have an appetite at all and can't remember half the things I was saying to them. 

The two consultants and registrar came to see me one at a time. They wanted to see how I was doing and also make sure I fully understood how the surgery went. Dr M had came in and sat down and explained that the endometriosis was deep infiltrating (found deep within the tissue or organ) and was extensive. They managed to shave the endo off my bowel and remove most but had to leave a bit as they would've had to change the surgery to a laparotomy and I would've ended up with a colostomy bag but they wanted to avoid this. They did say that if I was to get anymore pain that further surgery would be needed in the future. I was grateful to them for doing the surgery and hopefully being pain free for longer this time. I was told that they'd shaved near a blood vessel and I had to stay in hospital as they needed to observe me just incase I was to become unwell. I had another two sets of bloods done so they could keep a close eye. That night in the ward the local anaesthetic from the incisions started to stop working and my pain was a bit worse than it had been. The nurses were so helpful and gave me oxycodone as tramadol wasn't as effective. The oxycodone worked within 25-30 minutes and I did feel a bit spaced out and like I was flying but I was more comfortable after that. I managed to get some sleep as I was aiming to mobilise out of bed that morning.

The student nurse helped me get out of bed and sit on my chair for a bit. I took it easy getting up but I felt quite unsteady but when I sat on the chair I began to feel okay again. The doctors said it was okay for the nurse to remove my catheter I was so happy when that came out. I was allowed to shower and I managed this independently. I had staff come in and knock to see if I was managing okay which I was. This was the first time I'd properly seen the incisions I had four this time and they were covered with dressings. I felt a lot better after a shower and my appetite had come back I managed most of my lunch and after ward round I was happy to find out that I was allowed to go home to continue my recovery. I was so looking forward to going home to my own bed and getting a proper good nights sleep as I was exhausted. 

"I feel weighed down"

The lack of understanding I've experienced over the last few days has just been ridiculous. I went for a medication review yesterday and they start looking at all my medications. I am on a different combination of medications for pain but that's because each work better at different times. Then the conversation goes to" you've been on that for quite a while now maybe it's time to decrease the dosage down and then eventually look at coming off it?" I just look at them because they believe that just because they can't see the amount of pain I battle with my endometriosis they assume I'm "okay" and think I don't feel it emotionally as well. They must expect me to be completely cold hearted and not feel anything. Just because I look "okay" certainly doesn't mean I'm okay. There's this perception that young people don't get unwell. I didn't ask to have endometriosis at such a young age. I am not the cause of my illness. I'm sorry I'm on tramadol which is a controlled drug because that's the only thing that helps when my pain is out of control and normal painkillers are doing nothing to help. The view that only older people are prescribed tramadol for pain because it's not normally something they prescribe to someone that's 19 years old. I'm sorry my body is shit and doesn't work like a normal persons would. To then find out yesterday when picking up my prescription they couldn't give it to me because the doctors had cancelled my medications and being told I had to go through my GP to find out why. There was an agreement I had with another doctor that we'd create a pain toolkit so I'd always have strategies for when the pain is bad and to be able to manage at home but to find that all the medications in this had been taken off just made me even more angry. I'm expected to deal with the symptoms of my illness, surgery and dealing with my medications when that should really be the GP's job and communicating with the endo team about what's happening because my GP hasn't made any contact with the nurses. What's the point in an MDT when they're not even using that approach?

I spoke to the endo nurse specialist today as it was the MDT meeting this afternoon. I left a message with her because I wanted an update of what's happening and to also tell her about the GP situation. She phoned back this afternoon and told me my MRI scan was reviewed at the meeting and the team have decided that colorectal input is definitely needed because of how complicated the surgery may be because of the location of the endometriosis but I'd get a letter explaining the meeting soon. I asked her about my medications and she said that it wouldn't be advisable to change any of my medications because of how difficult things are at the moment with going through so much and that's in her clinical opinion. She told me to contact the surgery but I can't just drop everything and make an appointment I have work so I wrote a letter for the doctor to read in the morning. It was easy to get it all down on paper with what I wanted to say about the whole medication side of it but trying to be honest about how I feel has been the hard part.....

People just don't understand how much endometriosis impacts a person's life. It's waking up in the morning more exhausted than you were the night before. Not knowing when the next flare up is going to happen and when it does being confined to your bed and medicated up with strong painkillers. The times when you have to phone into work and admit that you can't manage to come in because the pain is so bad. It's watching other people go on and live their lives while you are stopped by the chronic illness that's in the way of everything. The questions from professionals about whether or not you want children in the future and having to think ahead is just as scary. It's being on medication to control other issues that endometriosis causes within the immune system. It's finding it hard to speak out about the illness because you can't find the words and people assume it's just "period pain" which we as sufferers know it's not. It's dealing with constant side effects of medications that we're put on. Its the endless appointments discussing treatments and future surgery. The ways of controlling this horrendous condition because there is no cure. Feeling uncomfortable in your own body because of how distended your stomach is and it making me look about 3 months pregnant. People not knowing what to say to me and watch as they give me a hug and get emotional. It doesn't just affect me if affects those around me too. Did I forget to mention that I am devastated by this illness?

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.