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.

It's hard when your body fights against you💔

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...

'Our goal should be to find a day where no woman has to fight against her own body'

The Endometriosis Debate took place in the Scottish Parliament today and I have to say I was so pleased that it was being discussed. The last endometriosis debate was 16 years ago! It was positive to see the MSP's taking an interest and each giving a 4 minute speech about the condition. The condition is very much misunderstood not just by health professionals but wider society. It's a common condition and affects so many but there's no awareness around it. Most women wait an average 6+ years for a diagnosis and is one that is seen as a "normal" thing that all women go through. 

I hope a day comes in the future were endometriosis can be diagnosed quicker and women don't have to go through the suffering in fighting to get a diagnosis. The average time for diagnosis is 7 years and it's hard trying to get professionals to listen to you when they don't have much awareness of the disease. The journey to diagnosis takes so long you meet different doctors and consultants and each have a different medical opinion and want to try different things. The only way to confirm an endometriosis diagnosis is through laparoscopic surgery. How much better would it be if it could be detected on a scan or through a blood test? More research is required to hopefully make this statement reality. The need to go through laparoscopic surgery and each recovery time is different the professionals say two weeks but in reality it can take six weeks to feel like you again. A woman shouldn't have to fight to be heard. It takes courage for someone to stand up and fight for their health and to be understood. No woman should be told that all of this pain is in her head or that she needs psychiatric help. The detrimental effects that can have on a woman are endless. We just want our experiences to be validated not dismissed in a hurtful way. We must keep in mind though that not all woman can stand up and fight for their health and be heard and those are the ones who struggle to get the correct information. The fight to gain the right help and support is hard enough. There is only two specialist centres in the whole of Scotland for endometriosis whereas it is just as common as diabetes. If it's just as common as diabetes why isn't everyone aware of the condition and how much of an impact it can have? It ruins relationships, affects fertility in some cases, causes pain and fatigue and depression to list a few and that's not all. This condition takes over some women's lives and take away that feeling of being in control of their own bodies. 

The vulnerability it brings. The negativity and the horrible side effects from the treatments. Before you think endometriosis is "just period pain" think again. You may not be able to see a women's suffering but behind this woman is pain and someone who's so bloody strong that she's trying to battle on. The days that flare ups occur and the pain medication becomes your best friend. The days stuck in bed with the hot water bottle in hope to get some relief from the pain. The days were wanting to surrender because you feel so defeated come but you remember you need to keep going because of responsibilities that you have. It brings depression with it and the feelings of self-hate being in a body that you try so hard to nourish and take care of but instead chooses to fight against you. This isn't the kind of live most people want but for us women with endometriosis it's what we have to deal with on a day to day basis.

Before anyone dismisses endometriosis or doesn't "believe" it's real think again. Our goal should be to find a day where no woman has to endure this and have to fight against her own body. We should be free from the pain and suffering endometriosis brings. 

Then I saw the light again...

Endometriosis. People still ask me what it is despite it being a common condition. People think it's just pain but it's not; the physical and mental side of it makes the condition a much harder battle to fight. Some days things can be going okay when pain is at bay and painkiller use is to a minimum. Then there's other days. The days of pain, being confined to bed rest because of exhaustion and the painkiller use having to be increased. This is half of what it's like to suffer from endometriosis. If I could try and describe the other sides of it I would.

When I was first told about the strong possibility of having endometriosis I felt alone. The words made life feel like it had come to a standstill. The anger attached because of how much I'd been dismissed and my symptoms seen as something "psychological" and not being validated. I knew nobody who had this condition which I'd never heard of. The hours after that appointment researching what endometriosis was. I saw C that same day and when she said to me " I've got that too" it had become the most comforting words I'd heard that day. To meet someone who could share the same struggle with me and not pretend to know what I was dealing with. To have someone who I could share this uncertain journey with and who'd be able to advise because they'd been where I was when first receiving a diagnosis. I found the processing of what I was dealing with hard. There were so many things that came into question fertility being the biggest one. When you're young you have dreams of what you want in life when you become an adult things like having your own children and bringing them up to be the best that they can possibly be. I'm going to be honest here but it was so overwhelming. The amount of misinformation I was given by professionals who clearly misunderstood the condition. The best thing I ever done was join online support groups and meeting other women who suffer from this horrendous condition. 

Those women who are also known as my endo sisters. They became my hope on the dark days and understand what I was thinking and feeling. To read posts from other women with the same fears as me. To finally not feeling ashamed of saying what I was thinking and hearing/seeing the words "me too." The girls who have become like family and who just get how much suffering we have to deal with and the things endometriosis does. My endo sisters are my biggest supporters and have been the light when I've been in the darkness💛🎗

Endometriosis Awareness💛🎗

Since the age of 13 I'd always suffered from painful periods. They were that bad that I was sent home from school or would spend days in bed in too much pain to do anything. I went to the GP about it and they reassured me it was all part of " becoming a woman" and would prescribe painkillers to help with the pain. I had a lot of faith in the GP's back then and believed what they were telling me. I just assumed that if they said so then this was all just a normal thing. It was trial and error from then as some painkillers worked and others didn't do anything for me except cause side effects. The next thing the doctors wanted to try was hormone treatments. They tried me on the contraceptive pill to see if that would help and gave me a pack to take for three months without a break but this made my pain worse and did nothing but play havoc with my mood. Pain became a common concern that I went to my GP about but none of them seemed to think it was a problem and just kept giving me painkillers and contraceptives to try. At the age of 16 I was sitting in front of a doctor who then told me that " the only way to get relief from the pain would be becoming pregnant," I remember her saying this to me and I was just sitting there not knowing how to respond. I was only 16 and teen pregnancy was being promoted?! I was starting to get fed up of trying to get them to listen that I just took the painkillers they prescribed and tried to deal with the pain the best I could. 

I was referred to gynaecology and seen as an outpatient. I remember the day very well I was undergoing training for a new job I was starting and the pain flared up. It was excruciating right up my back and into my abdomen it was like someone was dragging a knife down my back. I ran out of the room and into a toilet cubicle and was doubled over in pain vomiting and bleeding heavily. I phoned my GP surgery and they put an emergency referral in to gynaecology again and wrote me up for an antisickness. An appointment came through for two weeks later and  I was hoping they could give me some answers. The first consultant I'd seen was sure that it was "just period pain" and tried me on a contraceptive called provera which is a type of estrogen hormone. The first few weeks of taking it and it just didn't agree with me at all. I was still in pain and having to take time off work in order to rest because I didn't feel well and it made me feel depressed. I went back to see another consultant a few months later who then told me that my pain was most likely "dysfunctional" and maybe " there was no cause to it as it could all just be in my head." To be told that my pain wasn't real and I was imagining it was upsetting. I wanted someone to validate what I was experiencing not tell me it was all psychological. Just because they couldn't see it didn't mean it wasn't there. I was told that doing surgery would be pointless as it will show nothing and would affect my chances of having children. I was sent away again this time I was to try a transdermal patch which I would replace once a week and it would release hormones into my body. I argued that this was the same as the other hormones they'd given me but in a different form and I was told that it wasn't. I tried it anyway but it caused the same effects as the provera did and the feeling of being on edge was just too much to bare that my GP took me off it and requested me to be seen again. The amount of pain I was in was horrible and when the pain came the bloating started and I felt uncomfortable...

It wasn't until October 2016 the consultant decided that they needed to look further into my case so I was booked in for a laparoscopy. I had my preop assessment and then was asked to attend an appointment with a clinical nurse specialist. She sat me down and explained that I'd been referred to her and she wanted to chat to me before surgery as they were 100% certain I had endometriosis. She took me through what endometriosis was and wanted to hear what I'd tried already and how it had been getting someone to listen. The scary thing was she wasn't surprised by the responses I'd had from professionals! So many other women had experienced the same responses and it had taken so long for them to be listened to as well.

In December 2016 I was admitted to St John's Hospital and underwent a laparoscopy. The build up to the surgery was scary but my GP was so supportive. I had no idea what they were going to say and the thought of them finding nothing ran through my mind and if that was the case would they just say it was all in my head and leave it at that? I remember coming round from surgery and being back in the ward with the other girls. The consultant came round to talk about findings during surgery and when he came to see me he told me all the years of pain had been caused by endometriosis. He explained that he'd found endometriosis outside my uterus which he removed but also on my bowel but couldn't remove it due to the risks. After 6 years I finally had a diagnosis! 

2 days post-op 

I believe that there needs to be more awareness raised about endometriosis. It's a common condition but hardly anyone knows what it is. If there was more awareness raised this would lead to more women being aware of what is and what isn't normal. I wish that at school I was taught about this in PSE because then I would've noticed the signs a lot quicker and wouldn't have had to fight to get the answers which emotionally does take its toll. If I had to give a piece of advice it would be that you know your own body and if something doesn't feel right don't be afraid to get it seen to by a GP and never be afraid to seek a second opinion. I don't want any other girl to have to go through what I have. Together we can raise awareness of this horrendous condition.