My journey with endometriosis

If you are unlucky enough to have heard of this word, then you are probably a sufferer of this condition or have a friend or family member who is. In fact, we probably almost all know somebody that suffers. Latest research published on the Endometriosis UK website suggests that 1 in 10 woman of reproductive age in the UK suffer and 10% of woman in the world, that equates to 176 million of us worldwide who have this experience. In fact endometriosis is the second most prevailing gynaecological condition in the UK however, is not often recognised and diagnosis time takes on average 7.5 years from a woman first experiencing onset of symptoms to receiving the diagnosis and subsequent treatment.

The research that I have conducted for this article has taken me to the far corners of the internet and the more fact and figures I read about it the more upset I have become. I think the first thing we need to all remember is that this is real and just because we have a uterus does not mean that we deserve to live through this level of pain on a daily basis or that we should accept it. I think the culture of woman, particularly in the western world is one wherby we get on with things, we keep going. We don’t want to be seen as moaners, negative or always complaining. I want to start this by saying – you are not grumbling, you have a serious and extremely prevalent health condition and you are allowed to mention it. You have permission to tell your male counterparts about it without feeling like you are making them feel uncomfortable because you dared to mention the womb. This is an invisible disease; please help me to make sure it isn’t a silent one too. 176 million of us are enough to start a bloody loud conversation surely?

I am going to start by sharing my story; it is a long but relatable one and a journey I think is highly worth telling. I am now a 24 years old young woman and my experience with this illness started when I was 15. 10 years of existing with it and I think it's important for us to raise awareness, for us as woman to stand together and support our ovarian sistaaas and to tell tales of survival. When I reflect back to when I was a scared fifteen year old it would have been a relief had there had been someone slightly older, wiser and with a bit more life experience to support me, show me there was hope and to reassure me that I would be okay. 

Throughout my late school years and through both of my years at sixth form I suffered, I had never at this time heard of endometriosis until it completely turned my life upside down. It’s not something I like to talk about and many of those people who are close to me will have never heard of this story themselves but I feel if I write this it may possibly have the potential to help a woman or young girl just like me.  

The first time I suffered with endometriosis was when I was 15 and studying for my GCSEs. I started my periods incredibly young whilst I was still in primary school and don’t even remember not being in agonising pain. I remember one Saturday I had been having a mooch around town with mum, I came home and started to feel unwell, I told my family, complaining that I felt headachy and nauseous but this wasn’t a unique thing for me to experience, I walked up stairs to go and lie down. I didn’t get the opportunity to, my legs began to shake, and the nausea increased. Next came the pain, I got shooting pains down both sides of my body, it felt like someone was stabbing me over and over and I know that I will remember that day for a lifetime. I was in floods of tears; the best way to describe it was the worst possible period pain you’ve ever felt times by a million. It was excruciating. I remember calling for help as I fell to my knees and sobbed. My mum came running up the stairs and looked quite horrified by my appearance, she literally picked me up, tucked me into bed and tried to calm me down until I fell asleep.

Several hours later I woke up and felt completely fine. The drama of the hours before seemed to have subsided. The next day I was okay until the evening. Then Monday came and I was meant to be going to school, for some reason I was very hesitant to go, I decided to stay at home. I was watching some day time TV and then I started to feel worried, my GCSE’s were coming up and I felt I should be revising, I remember my history folder being on the floor beside my bed, I bent down to pick up the folder and immediately the pain came back. I was on the floor in an instant, screaming and trying to fight the horrible pain that had my whole body struck, I cried and cried for what seemed like hours and eventually rang my mums work when I couldn’t take the pain any longer for her to come rushing home.

This is when it began, I went to the doctors, they said it could be that my appendix had burst, I’d get sent to the local acute trust daily for them to send me home with ‘woman’s problems’ as the diagnosis and was told to take paracetamol. I had to go to the doctors every single day; I had blood test after blood test and daily observations. I would see several GPS who all told me I was a ‘mystery’ and I was probably just stressed and should revisit if the pain got worse. I had weeks of school that first time, the pain didn’t go away and I was no closer to a diagnosis. I was frustrated, there was something wrong with my body and I felt no one was taking me seriously. Over a month off school and I returned to do my GCSE’s, it was horrific – I didn’t feel like me, I felt like something had taken over my body and I didn’t know whether I would pass even the most basic exam. A few months later when I received my results, which meant I could go on to do my a-levels I was overwhelmed with relief.

I had a very poor attendance at college; I scraped through lessons, barely ever did a whole week and constantly felt stressed and anxious. I took 4 a-levels, I couldn’t attend all of the lessons, I was physically too ill too. Some days I would lie in bed in the foetal position because the pain was so bad and other days I would be so tired because of the physical aspects of the illness that I hand on heart couldn’t get out of bed. I was determined to succeed though and I did. My family were absolutely fantastic, my mum was my number one supporter, she attended every single one of my frustrating doctors appointments with me and and my brother and stepfather were so respectful and supportive too. As the illness worsened and in my second year of sixth form I really felt like giving up. It seemed impossible that I could get through my a-levels, my teachers didn’t believe there was anything wrong with me, some even referred me to as lazy and a lot of the time I contemplated quitting and giving up on it all. My GP appointments continued to be frustrating and some GPs even began to question my mental wellbeing.

I was three years down the line and I was being sent to specialists in gastroenterology was subjected to many tests, including an invasive endoscopy procedure. Every single test came back clear. I felt like I wasn’t being listened to, my instinct was that this was a gynaecological problem. Eventually, after much pleading with a GP from my practice I was sent to see a specialised gynaecologist in the local private hospital. He changed everything, for a while I had been considering endometriosis, my mum and aunt had both suggested the possibility to me and after lots of research I really thought this was the cause of the pain I had been suffering. The consultant I saw instantly thought the same, and immediately booked me in for a laparoscopy.

In July, I had my laparoscopy procedure – three and a half years after experiencing my first symptoms. It was scary and nothing could have prepared me for the emotion I would feel when I woke up and the consultant showed me images from inside, I was diagnosed with severe endometriosis. I cried a lot, I wasn’t crying because of the diagnosis, I was crying that there had been one, I was crying because I was so relieved that something was actually wrong medically and I wasn’t crazy like everyone had thought. The procedure had been painful, but not excessively so given it was keyhole, the consultant had removed away a lot of the endo tissue. The next week, I received my a-level results and was chuffed to bits that I had passed all 4 subjects with good grades.  I wasn’t able to do what normal 18 year olds would do which is go out and celebrate, and it had been a period of real isolation for me. At 18 you should be partying, going out and being young and free. That was not my reality. 

The procedure was the best thing that happened to me and made the next few years of my journey much easier. That is not to say I do not still experience daily symptoms and pain, because I do. But it does mean that for the first time in years life became bearable again. Symptoms such as headaches, nausea, and constant lower back and leg pain became an ordinary part of life. I have lived with chronic pain and perhaps the thing I have struggled with most is the significant fatigue and lack of energy. I think we sometimes forget how physically and emotionally exhausting having a chronic illness is. My symptoms worsen during the dreaded time of the month, and I use the mini pill to elevate some of my symptoms, but endometriosis is definitely part of who I am.

However, to those of you out there at the beginning of your journey who think you have a bleak future in front of you. I don’t believe that is the case. I function and live like any normal 24 year old, friends and colleagues will undoubtedly read this and be shocked. I work for the NHS full time and have for the last six years. I am still very close to my family; I have the most incredible friends in the whole entire world and a support system, which blows me away everyday. I travel because I love too, I go out, I sing, I dance and I go on adventures, I’m active, I’m never home, I work really really hard but I also live a fun and fulfilled life. What endometriosis has taught me is strength. I am so much stronger than the 24 year old version of myself who didn’t live through this. I am brave because I have to be but I am also so compassionate and empathetic, I believe that every single person in life is struggling with something that the rest of us are not aware of and I always try to be kind and show love and support to those around me. This doesn’t mean that given the opportunity I wouldn’t kick my endometriosis to the curb or bury it in the depths of hell – but it does mean I don’t see it as the enemy anymore.

Endometriosis has opened a door to a struggle with mental health for me, it is easy to feel isolated, lonely, anxious, depressed and as if there is no good in the future for you. In actual fact, the hormone changes your body experiences and the hormone balance does this to you. But to feel sad, is a choice, every mind-set is. I now choose to live a life of abundance, happiness and gratefulness. I choose to deal with the situation life has handed me and be positive about it as much as I can.

I have also spent a lot of time over the last few years worrying about my fertility; it is scary to think that motherhood might not be an option for me. Actually, it’s terrifying – I laugh and joke with my friends about how I would be a rubbish mother anyway, but in reality most young woman want the opportunity to be able to have children. What I have learnt, is that so many woman with this illness go on to give birth to beautiful children, I have friends that have done that. Science is constantly evolving and there are so many more options for us all then there were 20 years ago, there is hope. And I think hope has to be our focus.

If I could give any advice, to the 15 year old me, to every young woman who is reading this or every mature woman who I am sure has a lot more knowledge and wisdom on the subject than I do. I would say fight, fight it, keep going and make your future bright and great. Do not let this one thing define you. Do not let it stop you doing the things that light you up, that you love. Please don’t let it steal your happiness. You control that. This illness will sometimes give you limitations and there will be days where you cannot get out of bed, but on the days you can you owe it to yourself to go and live a wonderful and beautiful life. If anything be proud – own it, tell people you have a chronic illness and yet you are still a total and utter bad ass. I choose to feel lucky, I am not terminally ill, I have the hope of tomorrow and a future and many people in this world don’t have that. Let this illness improve the person you are, let it make you determined to strive for greatness and make the days you feel good mean something. And when all else fails, remember you are not alone – there are millions of woman feeling exactly the way you do.