We're delighted to introduce you today to our new awareness representative - Abbie Stapleton - who lives in Cambridgshire. Abbie experienced symptoms for 10 years before she was finally diagnosed with endometriosis in May 2019. She's passionate about raising awareness of endometriosis and driving change for the 1.5million with the condition in the UK. Read on to find out more.
Abbie - thanks so much for coming on board as an awareness representative! Could you tell us a little bit about yourself and your journey with endometriosis?
I’m Abbie, 25 years old and live in Cambridgeshire with my husband and cat Luna. I am the owner of the blog and Instagram Cheerfully Live (@cheerfullylive). I was diagnosed with Endometriosis in May 2019 after deep-infiltrating and severe disease was seen on my MRI scan. I had experienced symptoms and pain for 10 years before I received my diagnosis. Many times I was told that my pain was “normal”, “just something as a woman I had to go through”, that I had “a low pain threshold” and was even once asked “are you sure you’re not over-exaggerating?”. I went through many years of trialling different hormonal contraceptives and painkillers. Once I’d been diagnosed, I went on to have Endometriosis excision surgery with a specialist consultant, colo-rectal and urology teams in December 2020, where it was confirmed that the tissue removed was definitely Endometriosis. Since then I’ve been on the long and rocky journey of recovery, where I’ve noticed a significant difference in my pain, which has been amazing! I still live in a degree of pain from nerve damage from Endometriosis and my other conditions, but it’s been much easier to manage post surgery.
What drives you to raise awareness of endometriosis?
It took 10 years for me to get a diagnosis of Endometriosis and in that time, it had spread and attached to many of my organs, causing debilitating chronic pain and symptoms that meant I had to leave my job as a nurse in the NHS. I lost so much of my confidence and felt like I lost my identity, it was a very lonely and isolating experience. It shouldn’t take on average 8 years to get a diagnosis, this is not okay. I speak about Endometriosis, so that more people may understand what Endometriosis is, that it is a whole body disease and encourage people to advocate for themselves when they feel something isn’t right with their bodies! I also raise awareness so that people understand that they are never alone - there is an amazing community of people who have Endometriosis and we are all here to support you!
What are your hopes for the future in terms of seeing change to the way endometriosis is viewed by society?
I hope that in the future there will be more knowledge and understanding from primary healthcare services such as GPs and A&E professionals, so that they’ll be able to notice when someone might be presenting with Endometriosis, therefore leading to quicker diagnosis times. I also hope that society will realise that it is a whole body disease, not just a bad period - this disease can affect every organ in the body and it can cause huge damage if left for many years without treatment. We need to know that it is okay and very important to talk about taboo topics such as periods, infertility, sex, pleasure and intimacy. With conversation, attitudes shift and change is made!
You've spoken very openly about your relationship and the impact endometriosis has had on that (catch a video with Abbie and her husband below). What advice would you have for anyone who may be concerned to talk to their partner about their condition?
I want to start off by saying, I completely understand the impact that Endometriosis can have on relationships. It can bring up a lot of difficult topics like painful sex, infertility or trying to conceive, debilitating pain and your ability to work/do household tasks. I’m a huge advocate of having open and honest conversations with your partner about everything and anything. The more you are able to be honest, the more your partner will be able to understand what you are going through! Set aside some time to sit down together with no distractions, talk about your feelings, thoughts, fears, concerns, the good things and the challenges (if it’s easier, both write down what you want to say beforehand). Make sure you both have time to share what you want to say, actively listen to your partner and validate them by encouraging them to share their real feelings and thanking them for being honest with you. Remember that your partner loves you despite your conditions and most of the time they will want to do what they can to support you. Another thing I suggest is knowing your partner's love language (this is the way that they most feel loved e.g. receiving gifts, physical touch, quality time, acts of service and words of affirmation), this will enable you to make sureyou are showing love to your partner in the way that they most feel loved and really helps them to know that you do appreciate them! This helped me and partner keep the spark alive and know that we were investing in our marriage, even if we couldn’t have sex for a period of time, due to the pain.
You always seem to be so positive despite the pain you go through - what advice do you have for anyone struggling to stay positive, especially during the lockdown and with surgeries being cancelled?
Firstly, know that it’s okay to have bad days, weeks, months. We can’t be positive all of the time and the most important piece of advice I can give you is to feel your feelings. On days when i’m struggling, I find doing things that bring me little moments of joy really helpful - this can be something simple like getting some fresh air, eating your favourite food, talking to a friend, writing in your journal or connecting/getting support from people in the Endometriosis community. Keep advocating for yourself, speaking to your doctors and asking for help when you need it!