My experience

**TW – talks about surgery and infertility**

“You have stage 4 endometriosis” were the words that I heard when the consultant came to speak to me after surgery. I remember feeling validated that I finally knew what was wrong but angry that I was dismissed for many years previously. I had gone back and forward to doctors over the years with symptoms such as heavy and painful periods, pelvic pain, nausea and vomiting, bladder and bowel issues and fatigue. I remember I was told “it’s just a bad period” or “it’ll get better as you get older” and given the pill or other hormones.

Over the years I had multiple surgeries for endometriosis and the longest relief I got was about 4-6 weeks and then symptoms returned with a vengeance. The endometriosis was growing on different organs in my body and there were thick adhesions that were sticking my organs together causing severe pain. Endometriosis had damaged the nerves of my bladder which resulted in me having to self-catheterise up to 6/7x a day. I had 5 surgeries for the condition, and it got to a point I had tried everything to get some relief. I remember going to see my consultant and him recommending I go back on Zoladex which is an injection that puts you into a chemical menopause but there was nothing else he could do for me. I tried a few rounds of Zoladex just like he had said but I was still getting symptoms that were debilitating. I was having to take medication every day to manage the symptoms and to try and function but a lot of the time I was bed bound. I was so low, and I remember emailing my consultant to update on how I was doing and telling him honestly that “I couldn’t live like this anymore as it was too difficult” and they told me they didn’t know what else to do for me and left me to it. I researched different consultants across the UK who I could possibly reach out for help and the first one I found I had an appointment 1 week later. It was the best consultation I had ever had he listened to everything I said from when my symptoms first began, he did scans and bloods and then spoke to me about my options.

I knew surgery had to be the option as I had tried medications to manage the symptoms, but it wasn’t working. I had to make the most difficult decision and that was to have a total hysterectomy at the age of 24. I knew that this would be a decision I would have to make eventually but didn’t think it would be this young. They say that Endometriosis is a bad period, but for me it has meant losing organs, organ dysfunction and loss of fertility. I remember someone saying to me about having children and what if I was to meet a man who wanted kids and that I needed to seriously think about it. I didn’t let comments like this bother me because my quality of life was the main priority here and I wanted my life back. I know that if I want children in the future, I have the options of adoption or fostering.

There is no cure for Endometriosis, and I still have some symptoms and have to live with the damage it has caused to my bladder, but I have a better quality of life. My family and friends are such a huge support through all of this and I’m incredibly grateful because I know a lot of people may not have support. My experience is one of many and I don’t want anyone else to ever have to go through what I have. I want to be able to share my story and raise as much awareness as possible. Early intervention with endometriosis is key. If you are dismissed by one doctor, seek a second opinion because you know your body better than anyone else. There is support groups out there that can help.

My Hysterectomy Journey

 

** TW – Discusses surgery, menopause and infertility**

I wanted to use this post to talk about my hysterectomy journey. The reason for having a hysterectomy was due to Endometriosis. There is no cure for Endometriosis, but the hope was that this surgery would give me a better quality of life and for me it was to get my life back. I’ve had 4 surgeries previously for endometriosis and they have removed any visible endometriosis but unfortunately when I’ve had these surgeries the longest relief, I would get was a few months and then I’d be back to suffering again and my periods were so debilitating alongside the bleeding.

There were discussions around fertility at this point because with hysterectomy it would mean I would be infertile and unable to have children. In some ways I was sad that endometriosis had stolen my fertility from me, but I knew that I had to put my health first. The option of egg preservation had been suggested but due to Zoladex and being in chemical menopause for the last 7 months it wouldn’t be an option for me. I know that if I want kids in the future, I do have other options like adoption or fostering.

There was a process I had to go through due to my age, so I had to speak with a second gynae consultant who had to look at my notes and decided whether they agree this is the route to go down in terms of treatment options and look to see I fully understood the surgery. The second consultant did agree and signed off for the surgery to go ahead. I was supported through this whole process by my gynae consultant and also his Gynae Clinical Nurse Specialist. The plan was to have a total hysterectomy with removal of uterus, fallopian tubes and cervix but were hoping to preserve my ovaries depending on their condition. A few weeks before my surgery I had a discussion with the Pain Specialist Nurse and the Gynae CNS and we talked about pain relief post op. I was hoping post op I would wake up comfortable and pain free, so they had suggested giving me a PCA pump post op with fentanyl. A PCA pump stands for Patient Controlled Analgesia and when you need pain relief you would press a button which would administer the dose and the medical professional would preset the dosage so that you don’t give yourself too much. I think knowing this was going to be in place gave me a lot of reassurance.

I had to attend preoperative tests a few days before surgery, and I had various investigations done and felt it was all very thorough. Once the tests had been done, I got the confirmation for the procedure to go ahead on Thursday 1^st of September 2022. I was to be at the hospital at 7am that morning. I arrived and the anesthetist had come to see me to answer any questions I had and to talk about pain post op. The consultant then came to see me to go over the consent again and for me to sign it. I then got myself ready to go down to theatre as the procedure was scheduled to be at 9am. The nurse walked me down to the theatre and stayed with me whilst I was put under anesthetic and that was the last thing I remember.

I remember waking up post op and I was completely pain free. I’ve always had this heavy feeling in my stomach, but this was completely gone. It all felt a bit like a dream at that point. The nurse did my observations and told me I had the PCA to use when I needed it. I was able to then call my mum who was able to visit from 10am-6pm at night and she was only a short walk away. I think that the whole day I was sleeping on and off. I had a catheter inserted for 24 hours. I was given IV antibiotics whilst in hospital and an injection to prevent blood clots. The nurse who looked after me post op was called Teresa and she was amazing. She was checking on me regularly and just before her shift ended, she came in to see me and helped me to stand up for the first time since surgery and freshen up which helped so much and made me feel a bit better. We chatted about endometriosis and the procedures I’ve had due to it, and I always remember her saying to me “you’re going to be ok.”

I was in hospital overnight and on the Friday morning the physiotherapist came to see me and had given me information about physio exercises post-surgery and how best to get out of bed post hysterectomy, so I didn’t hurt myself as I was quite tender. We also went for a short walk around the ward, and I did stair practice, but it felt good to just get up and stretch my legs. The consultant also came to see me to let me know how surgery went and plan for follow up. The anesthetist had also come in to explain she was making some short-term changes to my medications and was discharging me home with a few weeks’ supply and some laxatives to keep my bowels moving. I had my catheter removed and I went back to self-catheterising. The consultant wanted to make sure I was passing a good amount of urine, so they had to measure my urine output each time I had went to pass urine. I was allowed to leave hospital that afternoon but had stayed in London until Monday and then I was able to travel back to Scotland.

This is Endometriosis

Some days living with endometriosis can get so overwhelming. It’s when things over the last couple of months hit you like a ton of bricks. For me I’m so used to pushing through the best I can because I know if I didn’t, I’d be stuck in bed and just want to cry all of the time. People don’t understand the impact this condition has. Just imagine every second all you feel is pain and not being able to enjoy food because you constantly feel sick to your stomach. It’s the times locking yourself in the bathroom vomiting and being doubled over because of the pain being so bad hoping that nobody else in the house hears you. It’s not being able to do the basic of things properly like going to the toilet because it’s so painful or having to catheterise. Some days just doing things like showering or getting out of bed can take so much effort and energy. It’s the days spent being sent to hospital to be reviewed because symptoms are not manageable and having to get IM injections in order to stop the sickness so that painkillers can at least have a chance to be effective. It’s when the one thing you’d rather do is go to bed because the tiredness is too much and sleep is like an escape. It’s the days when you try so hard and tell people you are “fine” despite wanting to just break down into tears. It’s feeling useless because your body is completely failing you and the constant courses of antibiotics for UTI’s and kidney infections. It’s the hospital appointments and being told that x, y or z has to be an option because this horrendous condition has caused problems with how the organs function. It’s being called a “medical mystery” because nobody knows what to do because your condition is complicated and having an impact on more than one organ in the body. This is the side of endometriosis that people don’t see.

It’s such a misunderstood condition. I had someone say to me a few weeks ago “But I thought surgery would make things better for you and I assumed you were doing well now” whilst you have to explain how much of a struggle things are and them not knowing what to say. People think once you have had surgery that should be you “better” and the sad reality is there is no cure and the aim is to improve quality of life and reduce levels of pain. It’s that feeling of not wanting to be a burden and being afraid to say to people about how you’re really doing because they might get sick of you being unwell and things not getting any better. The hard thing is you don’t want to be seen as constantly being negative. It’s wanting people to try and understand but also knowing they can only do this to a certain extent. It’s having to take different medications to try and function in order to have some sort of life. Being young and having a chronic illness it changes things because you have different priorities from someone else the same age. You see other people going out and achieving things and you feel stuck and like you are there just existing and not living. People think that after a while you get used to the pain but the truth is you don’t every day becomes a constant battle and living with pain can become overwhelming.

Endometriosis is not just a bad period. People don’t see it as serious or detrimental but it has the ability to stop your life completely. You will be alive, but incapable of living and work twice as hard for half of the success in life. It’s not living at all. It should be taken more seriously and there needs to be more understanding about the condition. People need to understand that this is not a choice and control is nowhere to be seen with this condition you are absolutely powerless. Some days are harder than others and today being one of them. The one thing I would love the most is my life back as endometriosis has stolen it away from me. The hardest thing is trying to be kind to yourself when you feel so rubbish and trying to remind yourself you can get through this bad patch even if you have been there multiple times before. For me some days it’s about taking it one step at a time and even if that’s difficult taking it hour by hour but reminding myself it’s ok to do this.

Endometriosis and Mental Health

*** TW does mention suicide***

I think with Endometriosis people don't realise just how much of an impact it can have on mental health. This is one bastard of a condition. When I was first diagnosed I didn't realise just how much my life would change. It’s a condition that’s just going to stop your life completely. Sometimes it is having to cancel plans, being dismissed by doctors or being confined to your bed having to take morphine because it’s so bad or other days being sent to hospital to get on top of symptoms. Sadly, this has become my normal and I know this is what life is like for a lot of people with the condition. You just feel like you are basically just existing. Some days you can feel so fucking devastated by this condition. The one thing that helps the most is the love and support of those around me. 

I'm hearing more and more about individuals with endometriosis sadly passing away due to suicide. This is honestly heartbreaking. It's sad that it can get to that point because the situation just gets unbearable. It's sad hearing that some people feel they they just don’t want to be here anymore. Not everyone who feels this way wants to die they've just got to a point when it's got far too difficult to cope with. Support when living with endometriosis is so important. I always like to think that when people feel low or just need to vent that they feel they can always come to me. I care and will listen. I may not be able to do anything to help or take the situation and make it better but just being there is enough. If I had a magic wand I would make things better for so many individuals out there. You don't have to be a counsellor to be there for someone with this condition just showing understanding and compassion is enough. Check in on your friends or loved ones with endometriosis ask them how they're doing and let them know you are there if they need to talk. Your support can mean a lot especially when someone is struggling.

Remember it’s ok not to be ok. There is support out there you don’t have to struggle with this on your own. I’m sending a hug and lots of love to those who are struggling currently. 

I'm only ever a message away you can get me on Instagram @endowarrior_x 

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Endometriosis Awareness Month Challenge

March is Endometriosis Awareness Month. I have been taking part in some of the March challenge which is a post every day on social media but this has been a bit difficult to stick to for a number of reasons. I was diagnosed with stage 4 endometriosis in 2016 and since then it has been a constant battle. When you are first diagnosed, you are made to think that if the endometriosis is surgically removed that should be you better and that it’s one surgery done right. Unfortunately that’s not the case as it grows back and it can do very quickly and it could mean going through multiple surgeries. Since 2016 I have had 3 surgeries for this condition and after each one I have had a few months relief before the symptoms return with a vengeance and the endometriosis grows back. I have been put on the waiting list for surgery number 4 and this is happening hopefully in the next few months as we are trying to find suitable dates for both surgeons to do a joint case. You would think having had surgery before it would get easier each time but it never does the hardest part is the uncertainty of it all.

The worst part of living with endometriosis is how unpredictable it can be. Some days I am able to do things and then the next day I can be stuck in bed unable to do anything due to the pain being so bad. The pain is always there and some days it requires me to take stronger painkillers for breakthrough such as morphine to try and get on top of it. The amount of times I’ve spent doubled over in so much pain vomiting because it’s that severe or the nights lying awake when everyone else is asleep because I can’t get comfortable and feel like I’m being stabbed repeatedly it’s so intense. I had someone ask me how I would rate my pain out of 10 (10 being the worst possible) and I said 6/10 other people would see that as unbearable whereas to me that is at a manageable level and I can somewhat function. People don’t understand the emotional toll that being chronically ill can have it’s exhausting being in pain constantly and feeling rubbish all of the time. There are some days when I just feel totally devastated by this condition and that’s really difficult but it’s the love and support of those around me that get me through those days.  This condition is scary and it’s when it starts to have an impact on other organs in the body and how they function. My endometriosis has progressed and this is probably the worst it has been in a while. The hardest thing is dismissal hospital for me is a last resort but when I’ve had to go I’ve been seen and told to go home and try the basics again like hot water bottles or strong medication because theres nothing they can do to help and you do leave feeling quite deflated. However, I’ve had experiences when I’ve had to go through NHS 24 they always ask me “what’s worked for you in the past you’ve been in this position many times before and know better than us?”  and they always do what I suggest like give me IM injections and then review things once that’s had time to work. Sometimes it feels like you know the condition better than what the doctors do. It does feel like when you do get to a point when your endo is a bit more complex to manage you are passed from pillar to post because nobody knows what to do with you. 

The Children in Scotland Conference starts tomorrow and this is the first time I have shared my Instagram with professionals and organizations that work with children and young people. I use my Instagram to not only raise awareness but also show the reality of what living with this condition is like. It started off as a place for getting support through the diagnosis process but since then it has grown and I’ve met so many amazing people on it and I receive numerous messages from people. I’ve had a few thank me for posting because it makes them feel less alone and my profile is honest and captures what this condition is like. I’ve had messages from teenagers who are struggling with symptoms and look for advice or someone to speak to. The account has also taught me that it’s ok not to be ok and the most important thing is getting support from others. Endo can have a huge impact on mental health. I’m always here for anyone that needs support or someone to talk to. It’s a shit condition to have but you don’t have to do it alone❤

Children in Scotland Conference

I’ve not really wrote on this blog properly but have mostly been using my awareness account on Instagram but I think getting back into writing in my blog. March is Endometriosis Awareness Month and it has been quite busy. I’ve been mainly preparing for the Children in Scotland Learning Week conference which starts on Monday (22^nd) I am delighted that they have included Endometriosis in the programme. The presentation is a mix of my own experience and also other people that were willing to share their experience with me. Some of the responses I’ve had have been quite sad because of the dismissal and fight people have had to put up in order to get the right care and treatment.

On my Instagram I receive so many messages from people who have the condition or are going through the process of diagnosis. I have had this account since 2015 and it was just the start of my journey with the condition. I have also had people message to tell me that they like my account because it’s honest and shows the reality of this condition.

The main focus of my presentation in Learning Week is to raise awareness but also give professionals/organizations who work with children and young people an idea of symptoms to be aware of and how they can help but also get that child or young person support. Menstrual Wellbeing is so important and is something that should be implemented in the PSE curriculum in Scottish education. Girls are starting periods as young as 11 years old. People might think that teaching a 12- or 13-year-old about periods isn’t appropriate but girls need to know what they are experiencing but also what’s normal and what isn’t. Some of the girls I spoke to are currently at school and the support received is very mixed. I have tried to give suggestions in my presentation and hope that anyone that’s attending that works in education will hopefully take these on board or come forward to discuss further. I also highlight how early intervention is important because if there is a delay in diagnosis like what I’ve had it can have a devastating effect on every aspect of life.

If anyone has any questions or wants to chat further you can contact me on the following:

Instagram - @endowarrior_x

Twitter - @dionnemcfx

Endometriosis and body image.

Body image is something a lot of us with Endometriosis struggle with. I struggle with this at some points and it can be so difficult. There has been days when I hate looking in the mirror because all I see is the bloat and I just feel disgusted. My endometriosis is pretty severe and my weight has fluctuated a lot.

I was put on a drug called Decapeptyl which puts my body into a false menopause the aim was to shut the ovaries down in the hope that my symptoms would ease. The drug caused unwanted side effects such as hot flushes, headaches, nausea, fluid retention and increased appetite. There was times I was just always hungry and couldn’t stop eating! I gained about 2/3 stone when I was on this drug and what was even more difficult is people would point it out to me. It would be comments like “it’s been ever since you went on that drug that you gained weight” or The “you’ve messed your body up” and comments like this would just make me want to hide. I had to come off the drug due to the fluid retention and I was so glad when I did because the side effects got better. The thing people don’t understand is you would honestly try absolutely anything to get relief from endometriosis symptoms. It is so debilitating and difficult. You find that other sufferers are the ones that understand you the most and in ways it’s comforting because someone knows how you are feeling.

The other issue that comes with Endometriosis is the bloating it is also known as “endo belly” this is uncomfortable and painful and causes abdominal distension. This has been something I struggle with especially at the moment. Some days I can look about five months pregnant due to it. It’s difficult to find clothing that fits so I always seem to go with maternity clothing as I find that’s most comfortable and you can get some lovely maternity tops and dresses. You might be thinking “why buy maternity clothing when your not even pregnant?!” the answer to that is that it’s the only thing that fits and it is stretchy so doesn’t tightly sit around the stomach like what a normal top would. I prefer the maternity range especially during flare ups and at one point I was worried about what people would think if they saw the label said maternity but now it doesn’t bother me as much because being comfortable in what you wear is so important. You do find that you get people acknowledging that you look a wee bit bloated and it does look like a pregnancy bump but I explain that this is part of the condition and there’s nothing I can do about it. The sort of advice I’ve had has been things like “why don’t you exercise, do yoga, eat healthy” you can do all that but still suffer from the endo bloat. No matter what you do it still happens and it’s all down to the inflammation that endometriosis causes.

This was one day when it was starting to flare it was painful and uncomfortable.

I am learning to love my body even though it is incredibly difficult. I find writing this is quite therapeutic as it’s the first time I’ve openly discussed this topic. This condition has caused me to focus on my weight and I have been unhappy at certain points. Endometriosis has meant that I’ve had to try different treatments to keep symptoms under control and it was hard because it didn’t just affect me physically but also emotionally too. This is a situation I’ll hold onto:

I recently had a positive body image day and it made me so happy as I actually felt comfortable in what I was wearing and a few people acknowledged it which was so nice and because I felt good it had a positive impact on my mood. 

Learning to love our bodies isn’t a process that happens overnight it takes loads of practice and patience. It’s the acceptance of these obstacles that we are faced with and trying to manage them. I’m going to finish with a quote that resonates with me “treat your body like it belongs to someone you love” Be kind to yourself and keep fighting because you are doing great!

X

Instagram - @endowarrior_x 

Post Op

I’m now one week post op. I’m feeling not too bad it’s more the tiredness and wounds still feeling pretty tender. I must admit the two nights I was in hospital I was looked after very well. My Endometriosis had grown back in several places and my bowel was stuck to my uterus along with adhesions. 

 The staff in Ward 210 were fantastic always made sure I was as comfortable and pain free as possible. The one thing I thought was really good was each staff member that looked after me actually took the time to speak to me and find out more about endometriosis and what it’s like to live with the condition. They were great when it came to the night before my op I was nervous and one of the healthcare assistants on nightshift made me a cup of tea and sat and let me offload which helped a lot. I got to know the staff quite well and what was even better the same staff were on shift post op so they knew me and I had the continuity of care . Even though the staff were busy they always took the time to come and check on you regularly and made sure that you were okay and not too sore. I felt a bit like a pin cushion at one point as over the two days I was admitted I had to get quite a few blood tests done but I knew that they needed to keep an eye on things before allowing me home. The staff went above and beyond and are an absolute credit to the NHS.

The thing I want to push is that “We know our own bodies and when something doesn’t feel right keep pushing until someone listens.” It’s been one hell of a year as I’ve had to fight to be listened to. I knew my Endometriosis had grown back but I was told it couldn’t have and it was “phantom pains” and I had one consultant who was just going to discharge me. You know yourself things are bad when there’s times you’re having to take morphine just to get on top of the pain and have to be sent to A&E.  I fought and got a second opinion and thankfully this consultant agreed to do an MRI and plan for surgery. The truth is regardless of how many surgeries you have the Endometriosis just grows back and for some it can be within weeks or months.To any individual out there struggling with bad periods or pelvic pain please do see your GP and ask for things to be investigated further. I’m hearing more and more stories of people being dismissed and it’s wrong.  EARLY INTERVENTION IS IMPORTANT.

We deserve better.

This week I’ve realised just how much things need to change as there just seems to be no clear pathway for women with Endometriosis when attending A&E. I’ve not been doing great these last few weeks and my GP made the decision to send me up to A&E after assessing me and deciding I needed to be seen. I felt the student nurse was the only one who really listened and seemed interested. I have a feeling it’s because the label 🏷“chronic pain” is in my notes this is used for almost everything. The doctor made the decision that since I’m having surgery in August they could review me then and insisted I’d be better at home with painkillers which I was already doing in the first place but this was doing very little. I have a feeling that this is endo causing problems I suspect something is stuck and that is what is causing all the left sided pain. The one thing I wanted was to be helped and my concerns listened to. 

Just because the obs and bloods are ok it is assumed that you are “fine” when deep down you just feel totally shit. I left feeling even more deflated than I went in. A&E for myself and a lot of other people is a last resort it means everything we’ve tried at home just hasn’t worked. 

 There just doesn’t seem to be anywhere to go when your really struggling with your endometriosis. It feels at times that you are just left to “get on with it.” It feels like you just hit a brick wall because you reach a point you don’t know what else to do and the doctors don’t know either because of lack of knowledge and understanding around the condition. If only they could see endometriosis they would see how hard it is living with such a painful condition and how debilitating it can be. Imagine not being able to do basic things or  function properly. You feel useless because your no good to anyone when your in pain. If it was visible attitudes would change. 

What us individuals with Endometriosis need is a clear and consistent pathway that means that when we attend A&E about anything gynaecological related from the minute we are triaged to then being seen by someone that is experienced to some extent in gynaecology  who will then be able to come up with a clear plan. I feel like we go from pillar to post most of the time. Let’s not forget the staff who go above and beyond when your either admitted through MAU or A&E they take the time to listen and in that moment it feels like someone is on your side and actually wants to understand and do something to help make the situation your in a bit less rubbish than it is. At times it feels like your fighting a never ending battle that’s filled with uncertainty. 

Sometimes you’ve got to really fight to get the right care and treatment you need. I’ve had to do that a lot and sometimes you have to be your own advocate in this. If there’s one thing that endometriosis has taught me it’s that I know my own body better than anyone else. I had a situation a year ago when a so called endo specialist told me my pains were “phantom pains” when I told him I was worried that the endo had grown back. I knew something was wrong because it was having a huge impact on my day to day life but still he wouldn’t listen. I had to persist and eventually got a second opinion and turns out I was right to be worried. If only I was listened to a year earlier maybe things would be different today and it wouldn’t have gotten this bad. I’m not the only person out there who’s been dismissed like this I know there are loads more people out there being told similar things. Instead I’ve decided to raise awareness and let people know that they know there own bodies better than anyone else and if they’re worried about something speak out until someone listens. 

The reality of Endometriosis

I’ve been feeling pretty deflated if I’m honest. The last year or so has been a struggle from being dismissed and told by a supposed to be endo specialist my pains were “phantom pains” even though I knew the Endometriosis had grown back and this was confirmed by MRI scan in January this year. I’ve had to constantly fight to get the care and treatment that I have desperately needed. I was listed for surgery in January and just got a date through for August but before then I was told “ We aren’t meeting the waiting time guarantee so it’ll probably be ____”  which is devastating. This hasn’t just happened to me but a lot of other individuals out there. This is a severe breach of the waiting times and this shouldn’t be allowed to keep happening even though sadly it will. Someone needs to stand up and acknowledge that there are severe gaps and individuals are falling through the net. 

There are NICE Guidelines which are set out that individuals with suspected or confirmed endometriosis can be referred to a specialist centre. You instantly think “great I might actually be getting somewhere and get good care” but the reality is these services are underfunded, have limited resources and simply cannot cope. This is when the GP comes in and has to be the one to pick up the pieces. Some people unfortunately don’t have the support from their GP but I’m incredibly grateful to mine she has went above and beyond and does everything she possibly can to help. I’ve felt like I have had more support from her even though sadly the support from the hospital hasn’t been there.

There is talk of “early intervention” and having faster diagnosis times but there are women out there that by the time they are seen by gynaecology have a laparoscopy the Endometriosis is severe and in some cases require other input from specialties such as urology due to bladder or colorectal because of bowel involvement. In Edinburgh it’s estimated that 400 to 500 individuals will require complex interventions/treatments. The wait for these specialties and treatments are lengthy which means having to “struggle on.” 

It’s a really horrible position to be in. I understand that there’s cuts throughout our NHS but what is frustrating is not having support there when you need it. Endometriosis is hell. It is one of the most painful conditions and I wouldn’t wish it on my worst enemy. It’s not just a bad period. Endometriosis comes with different problems it’s endless medications, appointments and hospital visits. For some it means being unable to hold down a full time job or not being able to work at all, dealing with the side effects of medications, struggling with the fatigue that endometriosis brings with it. Also some are losing internal organs or their fertility. There are too many suffering to the point that it affects mental health and some ladies have sadly died due to suicide because it’s all just got too much. This shouldn’t be happening and more needs to be done to help support individuals with Endometriosis. 

Change needs to happen.

Throughout March we raised as much awareness as possible of Endometriosis. We educated others and hoped that it would create better understanding of what life is like when living with a chronic condition. It gave us a voice which we used and talked about what needs to change. As I sit here and write this I have mixed emotions. Since January this year there have been more than 100 deaths to suicide within the Endometriosis community. There have sadly been 2 within the last 48 hours. It speaks volumes about the pain that sufferers endure. We all know how helpless endometriosis can make us feel and how isolating it can be. I guess it puts things into perspective and with helping run a support group I put a message out highlighting to other ladies that “it’s ok not to be ok” and that “it’s ok to reach out for support” and they can do so by a message either on the group page or privately to one of the admins. It’s about letting others know that they aren’t alone through this. Early intervention is so important. 

There is still a lack of understanding amongst doctors. I’ve spoken to a few ladies who are in the process of being diagnosed and are being told there pain is either “constipation” or “just bad period pain.” There is a Menstrual Wellbeing toolkit on the RCGP website that can be accessed by clinicians but looking at going forward how do we encourage doctors to use this toolkit in order to ensure quick diagnosis and treatment? Is it more about highlighting that this toolkit exists and building menstrual conditions into CPD within the workplace? I’m incredibly lucky to have a good GP who understands endo and has put supports in place for when I need them i.e. if I run out of painkillers, need to be seen or be sent up to the hospital.  Unfortunately other ladies don’t have that and having good quality care and support is key when living with a chronic condition.

Last week we had the Worldwide Endometriosis March in Glasgow. This was well attended and attracted attention from the public. We gave out leaflets with information on the condition which included details of support groups that run across Scotland. There was various banners and signs created which highlighted how us sufferers feel in regards to the condition. It was also important to highlight that Endometriosis doesn’t discriminate and that everyone should have access to the right care and support regardless of gender when suffering from this condition. 

Endometriosis Awareness Month may be over but that doesn’t mean we won’t stop raising awareness and educating others. I just want to give a shout out to those who are campaigning to improve care and treatment especially Monica Lennon, thank you for all that you do. Also Edinburgh Council for acknowledging that this is an important issue and awareness is needed. We won’t stop fighting for change💪🏻

Dear Medics,

Dear Medical Staff,

When I came to you years ago in so much pain. It wasn’t the type of pain that would get better after taking a paracetamol, nothing touched my pain. I came to you for help hoping that as my main point of contact on anything medical related you’d give me the right help and support. For years I battled with you and was dismissed. I knew my own body and knew something was wrong but you thought different. Yes, I hold anger because I was dismissed so much but it has made me even more determined to make change and hope that in future no other woman will have to experience that delay in diagnosis and treatment. This is what I want you to know...

I have Endometriosis. A condition that causes debilitating symptoms resulting in severe pain, trips to hospital, surgery, difficult treatments and endless medications. Endometriosis is misunderstood, it's not just a bad period, it's more than that. Imagine your own body betraying you and being in pain constantly. If my uterus were a person, I would, without hesitation, murder it and, after hearing all the evidence, years of pain and suffering, not a jury in the world would convict me.

Hospital for me means that I’ve tried everything I can at home and I’m not managing and need your help to make things manageable again. Most of us ladies are reluctant with having to go to hospital, we don’t want this to have to be our only option. We do everything we can at home to try and manage like having a hot bath, resting, heat pads and hot water bottles. I may look well but if you seen my insides you’d say different. I have Stage 4 Endometriosis, for me this means that I have an aggressive form of the condition which causes deep disease, organs fusing together, adhesions, constant pain and other debilitating issues. No matter what treatments I’ve tried the endometriosis just keeps on growing there’s nothing that I can do as it’s all about finding ways to manage the symptoms. This has become my “normal.”

I may not look unwell but when I come to you it means I’m really struggling. I may not show it because I’ve got so used to hiding and trying to carry on as normal when in pain. I may be that 21 year old that has been admitted due to a flare up but if you look at my notes you’ll see just how much of a fight I’ve had on my hands it’s been from multiple surgeries, endless medications and to going through an artificial menopause and only being 20 at the time. It’s a lot for anyone to get there heads around especially the information that comes with the different treatments. 

There is no cure for Endometriosis there are only ways to manage it. Please don’t tell me that “having a hysterectomy” or “having a baby” will cure me because it won’t. It’s not going to magically fix me. It can be upsetting for some of us ladies when you mention having a baby as some women unfortunately have difficulty in getting pregnant and can’t have a baby of their own. This can be a difficult conversation for some so please approach it sensitively. It’s also important for you to remember that this condition affects each woman differently and some women can manage their endometriosis through the use of hormones, pain relief or surgery. There is no right or wrong choice it’s about finding what works best for us. It can also be helpful when you suggest other options like acupuncture as I’m always looking for any other strategies in order to get some relief I may not seem interested at the time but I appreciate you suggesting things. 

Don’t be afraid to ask questions. It’s OK to ask about it. I’m not going to react negatively. Sometimes talking about it can help and it can feel like someone is listening. It’s OK to not know what to say, I don’t expect you to have all the answers. I guess there’s probably nothing that you can say or do that can make me better but your understanding goes such a long way and can have a huge impact. From the nurse practitioner who sat down with me and listened whilst I cried because it was so overwhelming and I was in a lot of pain to going and trying to talk to other professionals to make the situation better so I could get the right support I needed. I may not remember your name but I’ll never forget what you did for me. To the doctor and nurses in gynae triage who want to help me get on top of my pain and respect my wishes to be able to get back home. To them sitting down and asking “What does endometriosis mean for you?” and listen from the patients perspective and not just assume it’s “just a bad period.” It’s the staff who go that extra mile to make you feel cared for especially when in a lot of pain and feeling low.

This is just a few examples of what can help. It’s ok to ask questions and take an interest. I’m sure most of us ladies know that you do all that you can to help at what is a difficult time. All you do is appreciated and we know you go above and beyond to help. We may not show it but it really is. 

Twitter- @dionnemcfx

Instagram - @endowarrior_x

Full Council Meeting

I had the opportunity to attend the full council meeting at the City Chambers as a deputation. I’m passionate about raising awareness of endometriosis and I believe it’s something all women should be aware of alongside other menstrual conditions like PMDD etc which can also be a very debilitating illness. Councillor Mary Campbell put forward a motion which covered all aspects of menstrual conditions and how there needs to be more awareness, support and most importantly training for GP’s etc. 

The motion above passed unanimously at full council and was supported by Vice Convenor of Education, Alison Dickie who gave a brilliant speech in support of the motion. I had the council chamber talking about menstruation and it was a conversation that needed to be had -  it’s ok to talk period. 1 in 10 suffer from Endometriosis, 3 to 8% have PMDD and sadly an estimated 15% of women will commit suicide. This is a huge problem and we talk about the need for early intervention and preventing issues from getting so bad to the point it affects day to day life. I carried on for years not knowing that what I was experiencing was actually abnormal and later after years of dismissal finding out I have Stage 4 Endometriosis. I do wonder if I was made aware of it sooner could I have got help at an earlier stage in hope it would stop it getting so bad? There’s nothing I can do now as my Endometriosis is severe and if my uterus was a person, I would, without hesitation, murder it and, after hearing all the evidence, years of pain and suffering, not a jury in the world would convict me. I know that through raising awareness and educating others hopefully this can help to prevent any other women from going through years of dismissal and debilitating pain. 

We need to make teenage girls aware and the best way to do this is through schools. When I was at school I don’t remember covering much about periods all you were told is this is were you can access sanitary products if you need them. It’s not about scaring girls but making them aware so that they’re able to distinguish between normal and what isn’t. I have met girls over Instagram who are at that stage when they know something is wrong and are fighting for the right to be listened to. They are being dismissed and told “this is all in your head” “having a baby will solve the problem” or sent away and made to feel like they’re crazy. It gets to the point when you google your symptoms and just want an answer. I have been in that position before and know just how much of an effect it can have and it’s frustrating because it feels like your back to square one. If girls could have access to that information and be signposted to where they can get help and support that would make such a difference. Support is so important as these types of conditions can have a detrimental effect on mental health. It’s showing that in any situation it’s ok to talk about problems and it’s ok not to be ok. I’m lucky to have supportive people around me and a support group I go to and meet other ladies in similar situations which does help a lot. 

If anyone ever needs support it’s ok to reach out, you’re not alone in this. 

Breathing Space - 0800838587

Samaritans- 116 123

Endometriosis UK - Charity

Saying Bye to 2018: A letter to Endometriosis

Dear Endometriosis,

What a year it has been, 2018 is finally in the past and my god you haven’t half tested me this year. There have been times when you’ve broken me and I’ve not had much fight left in me. I knew I couldn’t let you win, you are one bastard of an illness. You’re always there and are always cause some sort of problems. It’s having to adapt in order to not only manage but function. It’s watching what your eating and drinking and recognising triggers for a flare up, planning outfits in order to hide the horrid bloating and living in leggings and loose fitted clothing, making sure your well equipped with medications and heat pads so you can use them the minute the pain starts. You have taught me to appreciate the good days and hold onto them tightly💛 The days when you are able to say “you know what I can do this” and feel that spark of positivity.

There have been days when I just can’t manage the pain at home and have had to be sent up to the hospital by my GP. Admitting defeat is hard but when in so much pain you find you’ll do anything for that bit of relief. I’m grateful to the hospital staff who do everything they can to make your admission as quick as possible. The nurses who are so understanding and make sure your written up for IVs or IM injections as soon as possible and want to do everything they can to help. I’ll always be grateful to the nurse who sat with me while I cried because everything had just got so overwhelming she listened and made me feel that it was okay not to be okay. I may not remember her name but I’ll never forget what she did for me. It’s those that help you through such a low time and do everything they can to help you, those that don’t give up on you the minute things get hard.

2019 may mean further surgery but it’s a step closer to getting my life back. Endometriosis took away my life and it won’t give it back. It’s the uncertainty of not knowing what’s ahead all you know is that you have stage 4 endometriosis and that it’s severe. 2018 saw me faced with the reality of being put through an artificial menopause. Being 20 years old and suffering from menopausal symptoms was hard. You couldn’t just turn around to a friend and say “ I’m going through the menopause I’m having a hot flush,” or the prospect of how do you explain to your boss that you are going through a shit time and dealing with menopause. You hear other people say how bad it is and how they dread it and you just sit there nobody else knowing that you in fact are going through it. It was the hardest thing but I managed to bare it and got through it. The times I felt that I couldn’t get through this and I did, I survived the times I didn’t think I could do it. I had days I wanted to scream and cry and I allowed myself to do so then picked myself up again and carried on. 

Endometriosis brings uncertainty with it. The not knowing if treatments will be successful in managing the condition for you to have somewhat a normal life and be able to function. The not knowing if you can have children of your own and fall pregnant naturally. The uncertainty of not knowing what the future holds and what’s ahead. 

Today I say goodbye to 2018 you are in my past now. 2019 I’m ready for you and I’m ready to fight this bastard of an illness.

X 

Endometriosis CPG Meeting

I was given the opportunity to talk at the Women's Health Cross Party Group meeting last week and I have to say what an amazing experience it was. Thank you to Monica Lennon for giving me the opportunity. I spoke alongside Katy Johnston and Emma Cox who is the CEO of Endometriosis UK. It was hard to share my story but I know that some people in the room were thinking "me too" at certain points in my presentation. Public speaking has never been something I find totally nerve wracking but I must admit this time in Parliament the nerves were starting to kick in a lot more. The meeting was attended by various organisations, other sufferers, politicians and three NHS staff. My main priority was highlighting what needs to change. We are living in a system that needs to change as lots of women are being failed and end up slipping through the net. I asked the Scottish Government to make menstrual wellbeing in the curriculum mandatory in Scotland as I reflected that if I was taught what was normal and what wasn't I could've got help sooner and got a diagnosis quicker. I also asked them if there could be some sort of resource for managers about the condition and how to support women in the workplace. The concerning thing is we are meant to be protected under the Equality Act 2010 but women are still losing jobs due to high sickness absence. The Equality Act needs to be strengthened as it definitely isn't protecting us women.

I felt it was important to talk about the illness openly so that people could capture just how debilitating the condition is. I wasn't going to sugarcoat it and say that my experience of accessing the right care and support was good because it hasn't been in parts. I'm extremely lucky as I have an amazing GP who is just brilliant and is there through the good and the bad. I feel for her though as she has to put up with all sorts like the tears, anger and frustration but she listens and fights in my corner. It takes time to find a good GP but when you do that's when you know you've got someone that has your back. The awareness of endometriosis amongst GP's varies as each medical practice is different. You find that some have an interest in endometriosis and are keen to go and research for more information or ask questions because they're interested. 

In terms of going forward there is lots of work that needs done to end the inequalities that women are facing within the health system. We can voice what needs improved but it's about persuading those who have the power to make decisions. These changes won't be overnight but it will be a certain length of time. The system needs to change. There are women out there who are falling through the net and are unable to get support and that needs to be addressed. 

The system needs to change.

I haven't wrote on this blog since the start of July things haven't been great. The most frustrating part of it all has been trying to access support. There have been numerous attempts by my GP to get in contact with the hospital but she had no response. The week later things escalated and I end up in agony and sent straight to A&E. The staff in the observation ward were so kind, the senior charge nurse took control of most of my care and took the time to listen. Unfortunately I received no support from the hospital after being discharged but I was lucky I had a good GP and she had a plan for symptom management. I left a message with the hospital and a week later she called back. I explained that I'd been admitted and what had been happening she said she'd call me back and try and find me an appointment. She called back and told me to "Phone at the end of next month to see if there's any appointments and get support from my GP in the meantime until I see gynae." I was so angry by this response, The hospital are meant to be there to help and provide management of medical conditions. My GP had done all that she could and she was asking the consultants to come up with a plan. I hate to think how many other women are being dismissed and made to struggle like this. Early intervention is important they say but women are being left until a situation is unmanageable and they end up in A&E and other symptoms become problematic. Endometriosis is misunderstood, it's not just a bad period, it's more than that. Imagine your body betraying you and being in pain constantly. If my uterus were a person, I would, without hesitation, murder it and, after hearing all the evidence, years of pain and suffering, not a jury in the world would convict me. 

I had a conversation with the CEO of Endometriosis UK and we chatted about current problems within the system. One of the main ones is accessing the support from medical professionals. Most are uneducated and don't know much about the condition. They assume it's "normal" and that "it will get better when you have a baby." You go through various different doctors to be told it's just a bad period or that it's all in your head and recommend a referral to psychiatric services. I saw one of the consultants in passing who had dismissed my concerns when I first went to see her and only intervened and decided further investigation was needed when I was doubled over in a toilet cubicle bleeding heavily, vomiting and in severe pain. It's worrying when not even a gynaecologist or a urogynae can't tell the difference between normal and what's not. I've been lucky to have a brilliant GP who just totally gets all this and does everything she can to help. I feel sorry for her at times as she's seen me in some states. I get better support from my GP than what I get from the hospital. I have made that clear in a questionnaire which I will be giving to the nurse in the MDT team in September. I feel completely let down by the hospital and unsupported. I honestly don't have much faith in them at all. My GP had to fight to get me seen sooner as she even said herself we can't allow things to be like this until Ocrober. Another GP made a valid point last week after prescribing me an antibiotic for a UTI. She said " So why aren't they treating the actual problem which is the endometriosis?" but instead they're masking it with hormones and a mixture of painkillers.

The treatments have been absolutely awful and the side effects have made it worse instead of better. The decapeptyl injection made no difference at all it didn't help the pain but instead made me gain weight, caused fluid retention, headaches, nausea etc. The decapeptyl injection is actually used in men with prostate cancer but they believe it's okay to give to females aged as young as 20. The menopausal effects were difficult and the HRT alongside didn't make much difference. I now refer to it as the evil drug and I was glad I stopped it. I've been off it now for about three months and am still experiencing the effects of it such as the joint pain. Due to there currently being no cure to endo the treatments are more of a trial like they believe drugs like amitriptyline can reduce the pain as its to do with nerves. The drug made me feel constantly hungover to the point it was hard to function it didn't make any difference at all. I feel like us ladies are treated like Guinea pigs. We know more about the condition than what the consultants do.  You go into a support group meeting and talk about symptoms you experience such as recurrent urine infections which consultants claim aren't linked to endo and you find that other women are experiencing the same thing. 

I'm just so angry at the whole system. There are so many changes that are needing to happen and hopefully we will see things improve over the next couple of years. We deserve better treatment and support. There are so many determined ladies out there who I know will have an impact on the improvements that are desperately needed. We will not stop fighting. 

End Endo 🎗

#whatiwishilearned campaign

Endometriosis UK have started a campaign called " #whatiwishilearned " to raise awareness of menstrual wellbeing in schools. I made a post on my endo Instagram account and was amazed at the response and messages I've received of people sharing their stories or those that are in the process of being diagnosed.

 The petition is 300 signatures away from 15,000 signatures so please do sign it🎗 : https://www.change.org/p/ngibb-menstrualhealth

It's important that menstrual health is taught in schools. Girls need to know what is normal and what isn't. For years I was told that being in severe pain was "normal" and that " it was part of being a woman." I struggled on but the only things the doctors did was throw painkillers at me and tell me that "having a baby would solve the problem." I mean at the age of 16 and still being at school it wasn't the most appropriate answer. The struggle went on and the doctors kept telling me that "its all in your head" and that "I needed psychiatric help." I knew my own body and knew that my pain was REAL.

I wish I learned what endometriosis was and what the signs were. I still wonder if it was diagnosed earlier would things have turned out just like they have at the moment. There's a lot of "what ifs" with endometriosis and when doctors doubt you I guess you start to doubt yourself. I wish that back then I persisted and demanded an answer. It's weird looking back as all the symptoms and issues was actually endometriosis even though I was told it was IBS etc. I wish I knew that being doubled over in severe pain, vomiting and bleeding wasn't normal at all despite doctors saying it was. 

I wish that I learned about various gynaecological conditions such as endometriosis, adenomyosis and PID. Maybe if we were made aware of these conditions and not made to feel embarrassed or ashamed by the illness more people would speak out and seek help. We have saw stars such as Rosie Marcel, Penny McNamee, Halsey share their experiences of living with endometriosis. Rosie Marcel who plays Jac Naylor in Holby City has also had a storyline which saw her being diagnosed with endometriosis and having to have surgery in the show due to a burst ovarian cyst. This condition does leave scars due to surgeries but....  

“All the best people have scars. You’re even more beautiful now that you’re a little less perfect” ❤️

I wish I learned the effects that certain treatments would have on me both physically and emotionally. I wish that the management of endometriosis was better explained. Most doctors are giving false information such as telling women that a "hysterectomy" or "birth control" can cure endometriosis. It's awful that some women have to be faced with these kind of decisions. It's like being told that going through an "artificial menopause" would stop your pain when in fact for some it doesn't even touch it. Instead you get hot flushes, mood swings, headaches, tiredness etc and the side effects just become too much to manage. 

I wish that the system for endometriosis could change. We are stuck in a system that provides no support or understanding. I wish that the diagnosis process was easier as some women wait years to be diagnosed. There isn't enough emotional support when you need it as being told you have endometriosis is a big thing as you don't know how much your life is going to change but instead your left to go and research and find information out yourself. I wish that us ladies were taken more seriously, we know our bodies better than anyone else and know when something isn't right. It shouldn't be a constant battle in order to be listened to. The one thing that is positive is that you meet loads of amazing women and we all stick together and support each other. Sometimes all we need is just someone to listen to how things are for us. The only people that understand are those that are going through it. It's difficult for someone who has no clue to understand. But us ladies we are warriors and WE WILL RISE. 

I've been meaning to write this for a couple of weeks but things haven't been great since stopping the decapeptyl (also known as the evil drug) due to side effects. I guess that it's ok not to be ok and that self care is the most important thing.Endometriosis has a huge impact physically, emotionally and mentally. The support in the endometriosis community has been great and everyone's so understanding which makes a big difference in a difficult situation. 

 

An open letter to the enemy; Endometriosis.

Dear Endometriosis,

You have caused nothing but problems over the years and now my body is becoming tired of you. The years of doctors telling me the pain I was in was normal. Being told that having a baby would solve all my problems at the age of 16. To then being told I needed psychiatric help and it was all in my head. Those words hurt more than anything. I knew there was something wrong but nobody would listen. They all thought I was mad. I would come out of appointments in tears because of how patrionising the doctors were being. "Your pain is dysfunctional," they would say and send me away yet again to cope with it for three months before reviewing me and in that three months things became worse. They would give me hormone pills to swallow in hope to mask the problem. You must have laughed when you seen this was happening. The minute I swallowed that pill you caused me nothing but distress. The days spent lying in bed thinking of how much I hated everything and that I wasn't trying hard enough. I would just crash and people would tell me to give it another few weeks. The doctors not understanding what was happening and telling me "it's probably just a bad day." I bared you for another month before coming off you and when doctors asked me to talk about what the hormones did they couldn't understand why I reacted that way. 

One doctor finally listened to my concerns and after my first surgery when I woke up still groggy as ever I was told that it was you who was causing all these problems over the last 6 years. From that moment I didn't know how much my life would change. I learned that I was a part of the 1 in 10 women who have this condition. The endless trips to the doctors for pain control, antibiotics to help with the bladder symptoms and to sit and tell them just how shit lthis illness is and how it's constant. The procedures I've had to go through just to see what mischief you are getting up to inside my body. You attached yourself to my bowel and the doctors found out the extent after reviewing an MRI scan. They hand me the results by hand and it's a lot to take in. After thinking the first surgery would have solved the issues it didn't. I had to go through a second surgery to remove you and this surgery was much bigger than the first as they had to shave you off my bowel and try there best to remove enough of you to make me somewhat pain free. They had a tough job as you weren't superficial and on the surface but deep endometriosis which was excessive and had to be cut out and other methods used to get rid of you. You've caused so many other issues with my body and other specialists are having to get involved in order to try and manage the problems. 

People just don't understand it. They try I guess, we'll give them that. The amount of times trying to explain what Endometriosis is. When explaining about the condition and people assuming it's just "painful periods" but it's more than that. It's an invisible illness and if only we could show you just how hard a battle we have to fight. When people say "have you tried to change your diet? exercise? think positively? take painkillers? have a baby?" It's not that simple as there's no cure. It may help manage the symptoms but that's a temporary measure. Different things work for different people. There isn't enough awareness of endometriosis out there. Sometimes even the medical staff don't get it and the ignorance and dismissal can be so hard to deal with. When your lying on a hospital bed in agony and you inform them you have endometriosis and they become silent and are unsure what to say next. The questions they ask without thinking like "any chance you're pregnant?" despite seeing on the notes you are getting injections which bring on artificial menopause. When you ask a doctor a question about a treatment and the reply you get is "that's way above my pay scale." All medical staff should be informed about endo and be able to provide answers to questions we ask.

I'll be marching in Glasgow with my other Endo Warriors to raise awareness of this horrific illness. There needs to be more support and understanding out there. Endometriosis really is an isolating illness and it's so important to have support around you. The Endo Community is a place where you can get support and find that understanding. It's so easy to talk to someone else who's in the same position and actually be heard. To any women out there who feels alone, has nobody to talk to or is having a shitty time us endo girls are all here for you💛 I know this is difficult and scary but I'll tell you one thing you are so bloody strong. Us women, we need to stick together through this. We will not stop fighting💪🏻

"Sometimes you need to do what's best for YOU"

The last time I wrote I was coming to a decision regarding treatment options to manage this illness. It's been a really difficult decision to make as there's been so many different things on my mind related to fertility, impact this illness is having and other people's views/concerns. But also looking at the fact that the consultant has said that the surgical route isn't necessary at the moment and it's more looking at what we can do in the short term. It's all complicated but I decided that I can't go on how I am at the moment. Its when you don't think it would get to that point where your just so desperate that you'll try anything. I guess it's looking at the "my body, my decisions," and realising that your the one in control and only you can decide what's best as nobody can make the decision for you.

I decided that I'd go through with the induced medical menopause and get the decapeptyl injection. I had second thoughts when in the waiting room I must admit. The question of "Am I really doing the right thing?" kept going through my mind. The injection itself was fine and the HRT alongside it isn't too bad at the moment. The only troublesome issues really have been the bloating, nausea and headaches. I've been finding myself having to go for naps but it's helping with the headaches. My stomach is quite sore and feels tight so maternity clothing has been a MUST this week as it's been the comfiest thing to wear. The issue I've found is that there's limited information out there about GnrH treatments it's more about personal opinion and doing what's best for you. There's not really much information that's suited to the patient but a chat with your GP or consultant can be useful. There's also in some areas that has accredited endometriosis centres the specialist nurses who can offer advice. The injection I get is every 28 days it can be given by the practice nurse and as well as that I'm taking a drug called Tibolone which is HRT and that just relieves menopausal symptoms and protects the bones as there's the risk of osteoporosis. 

https://themighty.com/2017/01/endometriosis-belly-stomach-maternity-clothes/

The above article really explains it so much. I am sure that many sufferers feel the exact same way about their body when going through "endo belly" but body image is affected as its about the need to hide the negative sides of the illness and it makes you more self conscious of how you look. I suppose the good thing as well is I can hide a heat pad under my clothing and nobody can see it. You know when your a chronic pain sufferer when you have four boxes of thermacare heat pads so your well prepared if a pain flare happens. 

People say it gets worse before it gets better so it's being prepared for that and giving it time. It's gonna take time to adjust to everything and I need to be patient with my body. I'm not sure how I feel about everything at the moment really it's all still quite uncertain but time is what I need I think. It's hard because people aren't really sure what to say about things currently as they say there isn't really any words of comfort or anything. It's like when supporting others with this illness around the same age or just a bit younger than me I can find the words to reassure/comfort them in a way. It's hard being in a body that just doesn't work properly. I saw urology and they've just been dismissive and the follow up from my hospital admission was pointless as they done another scan the good news is the hydronephrosis has resolved but there is still a stone/cyst showing on the kidney but they are unsure which it is and have decided not to do anything about it and keep an eye on things. I've been telling them about all the issues urology side of things but they won't listen. Endometriosis has caused so many different problems and it's just shit. I didn't think I'd have to go through an induced menopause at the age of 20. I'm on so many different medications and have to sit and sort out my meds into a dosette box for that next again week. This is stealing my life away and I want it back. Someone needs to hurry and find a cure for this dreadful condition. 

"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.