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!

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Instagram - @endowarrior_x