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Meet Emily

I was about 15/16 when I started experiencing the 'typical' symptoms, horrific heavy periods, cramps that seemed so much worse than my peers. As I got a little older, I noticed sex became so painful I was nearly in tears, and I knew something wasn't right. It was a back-and-forth trip to the GP after this and many days of just getting used to being uncomfortable or in pain. 

I had dreamed of joining the military full time but that was a distant pipe dream after my first surgery. Application denied. I joined the ACF instead, but I missed a lot of training. I skipped from job to job for a while not really knowing what to do after that. I was modelling a lot in my younger days (which funnily enough is how I met Carla! Having no idea our shared illness would give us so much in common these days). Modelling always seemed bearable because it was a temporary job. You put on a brave face for an hour or two behind a camera and then you could curl up after. I could book my jobs around my good days and have some photos to look at that made me feel like I was strong and beautiful, and not a crying mess in constant pain.

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I had just turned 19 when the word endometriosis was first mentioned, with a 'confirmed' diagnosis at 20 after my first surgery. I had never really been able to put a label on my symptoms as a collective and generally they were put down to the hardships of becoming a woman. I went back and forth and tried multiple methods of contraception to manage and control things. I struggled a lot with my moods and hormones being so all over the place. I found it hard to describe the pain I was in so I just worked through it as best I could rather than take the effort to explain how I was feeling unwell month after month. Eventually, after multiple diagnostic scans, MRIs and pain therapies, I had my first laparoscopy which gave me my official diagnosis. I was so relieved that I wasn't going crazy. At this point I did fully appreciate the impact it would have upon so many areas of my life. 

When I started more office-based work I really struggled. One particular manager at a very big corporate firm I worked for gave me a disciplinary for my absence. Whenever I was at work, I gave it my everything. I burnt myself out overcompensating for the fact I needed time off and I strived to prove myself and be the hardest worker in the room, and I still do to this day. I had surgery letters, doctor notes, a diagnosis, my time off was even a pattern with my time of the month (totally fitting with this disease) but I got my disciplinary anyway. I never felt valued. I always felt like it didn't matter how hard I tried. I was tarnished with 'being off sick' and I dread coming in when I was well. I got so down, and I almost wish I could go back and make them realise how toxic what they were doing was for a young woman. I really hope no one experiences what I did. 

 

Today I am blessed to have found a role with an incredible company that has been nothing but supportive since day one. Since joining my current employer I have had surgeries & IVF & Maternity leave all of which has been supported beyond question. After experiencing the bad side of workplaces I can safely say where I am now does it right and now my career is excelling despite my health challenges. Finding the right employer is so key with this illness. I have seen and felt both sides of this and I realise I wasn't the 'problem' it was the workplace culture. 

 

My career was something that naturally found a path to me and I focused more on finding the right workplace environment than a specific role. I have always been very open about my struggles with endometriosis. I know it will impact my ability to be present at work, but I commit to giving everything within my limitations and with some adjustments to my working patterns, I can be as valuable as any 'well' employee. Education around endometriosis is improving but it has a way to go. I do what I can to raise awareness and if people around me aren't aware then I help them understand as best I can. 

 

There were times where I was mentally and physically crippled. The pain could be so intense I could do nothing but curl up in a ball. I tried to distract myself. If I was on regular pain meds I would be maxed out. It radiated from my stomach down round my back. My whole body would hurt. I would get so frustrated and angry with myself. So many days if I was on a 'normal' pain day I would push through. Pop some pills and hope for the best. When it was at its worst I couldn't move. Leading up to some of my surgeries, I have been on Fentanyl patches & Oramorph to manage things and even then I still felt it. I think I almost did myself a dis-justice by pushing through some days because no one could really appreciate what I was going through. My symptoms personally were usually pain & headaches. I got the bleeding under control with the Mirena coil, but the pain was utterly unbearable. Mentally I suffered so much with the hormones being a total mess too. 

 

When I was young, I was so adventurous and I always remember saying I never wanted kids. I didn't want to be tied down and I guess as a woman it's what a lot of people expect from you, so I thought I wanted to defy that. I got a little older and was mutual. Then at 19 when I got my diagnosis, I was told there was a chance I wouldn't be able to. Something really switched in me then. It's like it became my whole purpose in life. I based so many decisions around it (both good and bad in hindsight). I was advised that my chances of conceiving through IVF were fairly strong if I tried young enough. It was always in the back of my mind in my early 20s. It really helped me make up my mind if it was something I wanted or not. Through this journey I realised being a mother was more important to me than I really knew. 

 

I was 19 when I was informed it would be tough. After each surgery and complication and round of chemical menopause, I was reminded it was going to get tougher and tougher. I had a balancing act and a gamble at each surgery and each time I agreed to a new drug. Every time I woke from an operation there seemed to have been more growths than the last time, more scar tissue, organs stuck together, damaged ovaries etc. I think this drove me more in my personal life to get my life together. The way I saw it, I had choices to make. I could live my youth and party and have fun and be carefree or I could get my head down and work to build a life for myself that was suitable to bring up a child in. If anything I feel blessed that I knew I had issues so early on so I could have the time to do everything I wanted to do before committing myself to motherhood. I was devastated that it was going to be difficult (any maybe not possible) for me. The final endometriosis surgery I had was due to be a full hysterectomy but I begged with the surgeon to just do what he could to remove the lesions and let me try for children. The minute I recovered from the operation I was calling IVF clinics to start the process. 

 

The IVF process is wildly played down in my opinion. It was thrown around like it was 'no big deal'. Oh you have Endometriosis? Well you are still young and are keeping your womb for now, just pop to an IVF clinic and they should be able to get you pregnant! No big deal right? wrong. so wrong. Firstly I would like to acknowledge how privileged we are as a generation that this option even exists. I am by no means talking negatively about IVF here, simply stressing the point that many doctors throw around the idea of it around like it's as straightforward as taking two paracetamol and using a hot water bottle. The fact that I knew there was hope for me to become a mother despite my countless surgeries, drug therapies and prolonged chemical menopause was nothing short of a miracle and I feel for so many women before me that did not have this opportunity. It was a motivation to know I had hope and it got me through some tough moments of pain. 

 

The initial process is fairly straight-forward. For me, personally, it was something I had built myself up to for about 6 years so nothing was a shock. They do some tests and consultations and plan for your journey to parenthood. Putting the plan into action was the hard part. There is an absolute emotional rollercoaster that comes with the process that I was not prepared for. Once you start the full regime, you'll face little hurdles you hadn't really considered, like injecting yourself, this is alien to a lot of people. I got some great advice from a diabetic friend of mine who hadn't considered how much I would struggle with this. Having just had an endometriosis surgery, my pain symptoms were under control and not too badly affected by the IVF meds however my hormones took a massive hit. I was a total mess most days and had to put a brave face on and turn up to work each day like nothing was going on. 

 

It's worth mentioning the financial pressure too. Working meant that I was incredibly fortunate to have access to a 'fertility benefit' through my employment contract that funded my IVF process. Without this I would have had to save a large chunk of cash which would have pushed our treatment back further. Funding is very different depending on your location though so it’s worth looking into what support is available in your area. 

 

If you are considering it, do not be afraid. Just because people don't talk about it doesn't mean millions of people aren't doing it. Egg freezing is an incredibly empowering thing to do as a woman and if I wasn't 'ready' (because when are you ever ready right?) for a baby, I absolutely would have done so and I know many that have. The same with IVF. If you want to be a parent and you are prepared to give yourself up emotionally to the ups and downs of the process, then take the plunge. If it is successful I promise it is the most incredible feeling in the world and if it isn't, you can hand on heart say that you gave it everything you could. However if it's not something you want to take on that's ok too. No one should feel pressured into this. It needs to be something you want. 

 

I am a big believer that knowledge is power. Research your clinic, their consultants, their success rates, be 100000% comfortable with your choice and know you can stick by it regardless of outcome. Research the treatment they propose, ask a million questions until you know every detail of what to expect at each stage and all the potential outcomes. Personally my lowest points mentally were the times when plans would change or things unexpected happened and I felt lost or out of control. Speak to people that have been through the process but don't take everyone's word as gospel. Fertility treatment is an incredibly personal thing, and your journey will be completely unique. Just because something did/didn't work for someone else doesn't mean you'll have the same result. It's important to remember that. Finally, be kind to yourself. However you are feeling or coping, just give yourself space and time to process every stage good or bad. Make time after each session to do something for your headspace. Take a walk, listen to music, just breathe a little before you jump back into the manic of life again.