My Chronic Illness Journey…

Since the age of 13, I can’t remember a time where I have gone more than 2 or 3 months without feeling poorly. Now I’m 25, my health has managed to recover slightly, but that’s only because I have made the decision not to say ‘you know what illnesses? You can do one!’

So, let’s start with defining the term ‘chronic illness’. According to a very popular search engine, chronic illness is defined as the following:  ‘A chronic condition is a human health condition or disease that is persistent or otherwise long-lasting in its effects or a disease that comes with time. The term chronic is often applied when the course of the disease lasts for more than three months.’

Not exactly great, right? Now, imagine you have been told you have not only 1, but 2 conditions that you have to life with for the rest of your life. Wonderful.

I’m gonna go back to basics now, and start from where it all began. You might find some relevance to your own health… you never know!

I was always a active, happy and healthy child up until my early teens. I never had any time off school, rarely caught bugs that were going round and in general was of very good health. My parents led healthy lifestyles and I was always taught that good food and plenty of exercise was the way to lead the best possible life.

That all was about to change when I started High School, at the age of 13. I noticed my health deteriorating – I wasn’t able to keep up with my peers, I struggled with staying awake after I got home from school, I was incredibly moody – the list goes on. I just didn’t feel right. It got to the point where I couldn’t physically lift myself off the sofa and my mum knew something was up. I had about 6 blood tests within 2 weeks in order to try and find out what was the matter, and as a process of elimination, it was determined that I was suffering from glandular fever. Glandular fever is a viral infection that mainly affects young adults. Symptoms include a high temperature, a sore throat, severe fatigue and swollen glands. Not only did I have the unpleasant symptoms but glandular fever came with a more long lasting impression for me – it completely obliterated my immune system. Not just a slight knock – we’re on about kicking me into the solar system and back.

I went back to school after a few weeks but I found day-to-day life incredibly hard. As a result of my immune system dropping, I went on to develop tonsillitis once a month, with each episode worsening as they went on. It got to the point where I was hallucinating in the middle of the night that I thought, this is enough! I want them out!

I had a tonsillectomy when I was 15 years old, as it was decided the best option considering how much school I was missing during my GCSE prep. I can hand on heart say it was one of the most painful things I’ve ever had to experience. To sum it up, the 4 year old in the bed next to me who had the exact same operation was running around Children’s Ward like a bat out of hell, compared to me who felt like I was on death’s door (no exaggeration, I promise!)

After that, things seemed to get better for a while. I passed all of my GCSE’s and went on to achieve 3 A-Levels. Things were on the up, and I was feeling the best I had for a loooooooong time.

It’s a darn tootin’ shame that things didn’t last. This is the first time I’ve properly recapped my health ever, and I must admit, I’ve felt a twinge of sadness knowing that once upon a time there was a time before my life was taken over by chronic illness.

Hey ho, on to 2010. Guys, this is where the female talk starts. I’m just sayin’, if periods aren’t your thang, then you might wanna leave now. Don’t say I didn’t warn you! I started experiencing crippling abdominal pains especially around the time of the month, and I had recurring kidney infections and pelvic inflammatory disease (PID). My GP recommended I see a Gynaecologist to rule out any sinister reasoning for my constant ailments.

I went to see a gynae who hmm’ed and ahh’ed at my symptoms, before suggesting I have the Mirena coil fitted. ‘The COIL?!’ I thought? I was 18, childless and scared sh*tless of having some contraption fitted which I wasn’t keen on at all, however, following the gynae’s advice – I went ahead. My personal experience with the coil was terrible – it did nothing to help my periods and it was never fitted properly therefore I became very ill. As far as I’m concerned, I never want to see another one of those things for as long as I live!

I was booked in for a laparoscopy in November 2011, which confirmed my diagnosis of endometriosis. Endometriosis is a condition where endometrial tissue finds a home outside of the uterus, which causes pelvic pain, heavy periods, painful intercourse amongst a whole host of symptoms. Endometriosis is incurable, although there are plenty of drug therapies and surgical interventions to help manage the pain.

I found the diagnosis of endometriosis quite difficult to handle, but I managed to get on with life as best I could. Looking back, my symptoms were very mild then and they were only about to get worse.

In December 2012, I was admitted to hospital with severe right sided abdominal pains. The pain had gotten worse through out the week, but by Friday afternoon I was bent double and unable to stand up straight. Initially, the doctors thought that I was suffering with appendicitis but I had no other symptoms. Yes, I was in a hell of a lot of pain but I had no fever, no vomiting so this was quickly ruled out. The doctors decided to investigate through another laparoscopy, and this time I was found to have a large ovarian cyst (the size of a red onion apparently!) The cyst was drained but was not able to be removed as they would have had to remove my ovary as well. The timing of this operation was terrible as my boyfriend and I were moving into our first home together a week later, so I was pretty useless to say the least! I developed a large infection in my wound site and was generally rather poorly after this surgery.

In February 2013, I begun to experience severe right sided pain again, and I immediately panicked that the cyst was back. I had an ultrasound and it was confirmed that the cyst had grown back again, but bigger. My GP wanted me to be seen by a gynaecologist again to discuss long-term options, but because of my previous experience, I asked to be seen by a different consultant. My wishes were granted and I now have the best endometriosis consultant I could ever ask for!

In July 2013, I was put under for my third laparoscopy. The cyst had magically disappeared, but the endometriosis had grown in patches over my bowel and uterus. The patches were removed via laser and I was discharged from hospital the same day. I made a brilliant recovery this time around and I was absolutely chuffed! Life seemed to be getting back to normal again.

My follow up with the consultant was booked for October 2013 and I was so desperate to go back and see him. The pain had continued since the surgery and I was at my wits end. I was getting to the stage where I was waking up in the morning petrified that my life was going to be like this forever – pain, pain and more pain. I was reassured by my consultant that this was not the case, and that there was an alternative who I was about to become very well accustomed with. Meet Mr Amitriptyline. Amitriptyline has been my lifesaver and I am so glad I found it. I started on a 10mg dose once a night, and that did the trick. Amitriptyline is commonly used as an anti-depressant but it can also be used in cases of chronic pain. The drug is very clever – it has been found to have an effect on the nervous system and the way the body manages pain. The pain messages travel through the body’s central nervous system, but this drug can help to stop those messages from reaching the brain. Great ey?!

Fast forward to August 2015. I was 18 months pain free and back to living life as a normal 23 year old. I had almost forgotten what it was like to have endometriosis and I’m not gonna lie, it was bliss. I went for a trip to London with my mum and on the train back I started to feel pain. I knew what the pain was but I did my typical put-it-to-the-back-of-my-mind thing, and carried on with my evening. It was a couple of weeks later when I knew that the pain wasn’t going to go away, that I eventually did something about it.

I visited my GP who thought it might be another cyst, so she sent me for an ultrasound. In my head, I was secretly hoping it’d be another cyst as I knew that they were quite easy to treat. In my appointment, the sonographer confirmed there were no cysts and that the pain must be coming from another cause. I knew there and then that that son of a bitch, endometriosis, was back. I politely said my thank yous and goodbyes, and then proceeded to lock myself in the staff toilet and cry for a solid 10 minutes. I  felt so low and upset with my body, why was it failing me, why wouldn’t it just leave me alone?!

I was referred back to my (lovely) consultant, who booked me in for another laparoscopy. I mentioned to my consultant that my pain seemed different from last time, which provoked him into frowning at me and lots of ‘right, ok’s. He wasn’t convinced that the pain I was describing was from endometriosis. My symptoms this time around were lower back pain, thigh pain and abdominal pain across the whole of my pelvic area. I was referred for an MRI scan.

On the MRI referral paperwork, I noted my consultant had written ‘?adenomyosis’ What do you do when you read this? Google it, obviously. I sent myself into sky-rocketing panic as I started to flick through the web. ‘Infertility’ ‘Miscarriage’ ‘Incurable’ were all words that were ingraining themselves into my already frazzled brain. I tried to keep calm but it didn’t really work.

I went for my MRI scan and 2 weeks later in April 2016, I received my diagnosis of adenomyosis. I was at work when I received the news. I dissolved into tears and was sent home. I took 2 weeks off work with what I suppose you can call ‘stress’. I didn’t have an appointment to see my consultant for 2 weeks therefore I was tearing my hair out. Imagine being diagnosed with something you think is so sinister and you have no answers? I couldn’t sleep, didn’t eat, couldn’t function. As someone who already suffers from anxiety, having this bit of information was doing me no favours.

After my appointment with the consultant, I felt slightly better but still not completely rested. It was explained to me that adenomyosis is a rare condition that rarely affects women of my age, especially childless ones. Adenomyosis is when the layers of the womb break through each other, causing the uterus to become smaller and misshapen. This is why miscarriage rates are higher in women who have adenomyosis, as the womb struggles to keep its firm shape during pregnancy. Why I have developed it is unknown, but it does have a relationship with endometriosis. It was decided I would need another laparoscopy (4 and counting!) to determine how severe the adenomyosis was. The consultant also informed me he would put dye through my fallopian tubes to see if they were blocked.

In July 2016, I went in for my fourth laparoscopy. I was scared out of my mind when I came round that I had gone blind – I couldn’t see anything therefore I was freaking, bad. I’m sure the nurse was laughing at me. She reassured me that it was a side effect of the anaesthetic and it would wear off, but try telling that to someone who has just come out of surgery! Poor me.

My consultant informed me that my fallopian tubes were clear and that the adenomyosis was not as bad as they initially anticipated. He removed a small patch of endometriosis from my ovary but said it was nothing to worry about. I was so over the moon with this news that I burst into tears. He told me to come back in 5 months time for a follow up and off I was sent packing.

It’s weird, but the next day I instantly felt better. The emotional and psychological stress of the past 3 months had been lifted and I could see clearly again. I made a good recovery and was back to work in 2 weeks.

I went back to see my consultant in December 2016, and all that was on my mind was ‘are we going to be able to have children? He gave us the all clear to have children naturally and with no problems. In his words, he doesn’t see why I should be any different to anyone else trying to conceive. My partner and I don’t want children just yet, but to find out that I shouldn’t have any troubles was just fan-bloody-tastic. I was put on another course of Amitriptyline for 6 months for the pain I’d still been having but I didn’t care. I was happy. I skipped out of the hospital feeling like I’d been given a fresh start.

2016 was an absolutely diabolical year in terms of my health – my initial appointment in January and my final appointment in December. I’m not silly though and I know that it could return at any time, but for now I’m just enjoying my life day-to-day and trying to help myself as best as I can.

I hope you’ve enjoyed reading my first blog post! Apologies for the wordiness but I’m sure you can appreciate that it’s a topic that has a lot to be discussed! If you have any questions, feel free to email me, or follow my social media pages.

I would really appreciate any feedback you may have, so drop my a comment below if you can 🙂

Love,

Ellie x

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