Young diagnosis

 A year ago my younger sister who is now 18 years old, began to feel incredibly ill. She was having extremely heavy periods, she was told the same as I was, that they just ‘ran in the family’ and she was given mefenamic acid to deal with the pain. It was exactly what happened to me. But things quickly got worse for her, she started having dizzy spells and feeling faint, my mum would find her sleeping during the day and she’d complain about having incredibly uncomfortable, excruciating pains all through the day and night. It got to the point where my mum was finding it hard to get her out of the house to school, to shower or to even feed her. My sister has never been one to show weakness, even when we were little she was always the boss but during that time I had never seen her so low, it was heartbreaking to watch. Her persistence at the doctors meant she had a ridiculous amount of blood tests done and the word ‘anaemic’ kept being tossed around because of her large amount of blood loss, weight loss and the weakness she was feeling. She was sick a couple of times, she completely lost her appetite and her immune system couldn’t fight off any common cold symptoms. The tests kept coming back with no signs of anaemia and they couldn’t figure out what was going on. During this time I was being put through similar tests and finally, after disclosing my painful sex problems, I was sent to a consultant, given an MRI and multiple tests which lead to exploratory surgery and finally my diagnosis of endometriosis. But as my sister wasn’t sexually active, it hadn’t occurred to us straight away that we may be suffering from the same problem.

After around 6 months of constant doctors appointments, several days missed of sixth form, meetings with teachers, meetings with doctors and both my mother and sisters stress levels being tested. The doctors finally decided to try my sister on the contraceptive pill. Although looking back now, they should have been aware of my history with it and realised that maybe it would potentially make things worse. Which it had for me and which it did for her! After having problems with 1 pill she went on to use another 2 types of the pill and currently has found one that’s not making anything worse…but it’s not necessarily making anything better either, and she is still taking prescribed painkillers. But what I find the most painful of it all, is that as well as all the pressures a normal 17/18-year-old has to go through, such as exams, friendship groups and meeting boys. My younger sister also had to deal with her body letting her down each day, her doctors letting her down every week and her school and friends not understanding what she was going through. Some days she would sleep in and not bother getting out of bed at all. But others she had to push herself out the door to make sure she passed her exams. I am so proud of what my sister achieved in that year, she did brilliantly despite the constant pain and bleeding she was going through.

On trips to my consultant to talk about my surgery and post-op before leaving my mum decided she would bring up my sister and her issues. After two meetings my consultant decided she wanted to meet her and see how she was for herself. Acknowledging my diagnosis and that endometriosis can be hereditary, my consultant believes she is suffering from endometriosis (although no diagnosis is definite without surgery proof). But because of her young age, the doctors are reluctant to push further with more tests or surgery at this point. Though this is a good thing, rushing into any surgery on that biological area of a young girl can have serious consequences, it also highlights the problem that at a very difficult age there are many girls out there living with the issues that endometriosis brings. I remember that dealing with my periods when I was younger was horrible, I learned self-care without realising I was looking after myself and to be honest I did a bad job of it. My sister is luckily managing well right now but she still has very bad days and is in a lot of pain at certain times of the month. But like all of us, she’s learning to listen to her body and understand ways in which it needs her support. 

We definitely need to focus on finding teachable ways of dealing with this disease because at such a young age it can really do some damage. If someone had spoken to me about endometriosis before I was 24 I think I would have definitely pushed harder to find out if I had it. Of course, we want to find a cure but raising awareness is the first step to achieving any funding, government help or charitable help. The incredible Carla Cressy is doing fantastically with her campaign in the UK for spreading awareness within the young community and she has a lot of exciting plans for the new year. Our Australian sisters are also doing amazing work to help push awareness globally for all endometriosis sufferers! These are all small moves in the right direction, but there is always going to be more that needs doing, there will always be more young girls needing guidance and support. I recently had a message from a lovely girl worried about what was going on with herself but she was worried about bothering her doctor about it all. It’s not normal to be in so much pain all the time, heavy bleeding and blood clots are not normal. Back pain, fainting, nausea and sickness during your period are not normal. Bloating out so much that you look 6 months pregnant is not normal! So to any young girls out there reading this, I urge you to be persistent, keep going to that doctor, keep pushing to have things looked into further and don’t settle on a diagnosis if you don’t believe its right. (It wasn’t bloody IBS!! and I knew it!! – refer to one of my previous post on my blog :))