Ambassador Rhiannon is bravely sharing her story of dealing with chronic recurring Endometriosis and Adenomyosis… This is her journey of dealing with it to finally doing something about it for good. We thank her for being so brave to open up and share her story… maybe it can help someone else.
If you’ve ever been someone that has experienced persistent and/or chronic pain, or know someone who has, then you would understand what it’s like to just “deal with it”; to put up with it until it fades into the background of your everyday life. You sense it’s there on some level, but you’ve become so used to that constant ache and pain, that it doesn’t really affect you that much anymore.
I have suffered from chronic recurring Endometriosis (endo) for the last 24 years. I am one of the small number of people that having a baby did not “fix it” and instead it steadily got worse as I got older. I have had multiple surgeries over the years to keep cleaning it all out and even tried using the Mirena to alleviate some of the symptoms. In 2013 when I was at my worst, I ended up in emergency surgery twice as my body rejected the Mirena.
Early 2014, I began to turn my life around and started re-discovering my passion for fitness and running. The passion grew, as the distances got longer. I’ve experienced amazing highs and dramatic lows in my running journey and I feel like I’m just getting started. But my passion and the constant search for those new experiences and highs can often lead me to neglect other parts of my life.
For almost a year now I felt that something wasn’t right “down there”. I had begun to feel the familiar niggly pains of my endo coming back, especially on my right side. Then I started to get random pains and aches that at the time I could easily pass off as training pains and fatigue as I was training for my first 100km ultra and that puts your body under a lot of stress.
However, I didn’t really have the time to take any time off from training in order to go get things checked and so, like my endo pain, I allowed the new aches and pains to just become part of my new daily life and learnt to deal with it.
After my 100km ultra in May, I took some time off from intense training, mainly to focus on my daughter and her journey with Perthes Disease, and so my body wasn’t as fatigued and yet the pain and symptoms were still there, and with nothing else to distract me I became acutely more aware of them. Suddenly, I was noticing that it sometimes hurt during sex, or that after I would go to the bathroom the pain would be so bad I would nearly cry. I could be standing there having a conversation, and then out of nowhere an invisible hand would grip my ovary and squeeze for dear life, and I would have to bend over momentarily to get my breath back.
But still I chose other things in my life as my priorities and pushed those thoughts out of my mind. My daughter is, and always will be, my number one priority. She had major surgery in July for Perthes and was completely immobile for a number of weeks and then in a wheelchair for 8 weeks. However, once she was out of her wheelchair, I was ready to meet with my coach to work through my goals for the rest of this year and next year. I had planned to finish the year off with a bang by running in a 50km race and I was super excited.
But you can only ignore something for so long and as much as I was telling myself that these new symptoms were just related to my endo, deep down in my heart I knew different.
So I reluctantly made an appointment to see my specialist, the first time in 4 years. I explained all these new little things that I had noticed happening, continually downplaying the situation “oh you know, it only hurts sometimes. I’m probably just being paranoid over nothing. It’s likely just my endo flaring up a bit nothing major”. He started with an examination, and straight away asked when my last pap smear was, as there were more visible abnormal cells again.
He then proceeded to put his hand up there and then push around with the other hand to feel any pain or swelling, and I instantly started to scream and swear. My whole uterus was seriously swollen and enlarged and pushing against other organs. He asked again about when I felt the pains and told me he was surprised I was getting any action or able to run at all with that amount of pain and swelling.
In addition to the endo I have Adenomyosis, which in laymen’s terms is like endo but inside the muscle wall of the uterus, and each month it causes bleeds that can’t go anywhere. This leads to swelling, bloating, irregular periods, severe period cramping, pain during sex and going to the bathroom, hormonal fluctuations, acne etc.
There is no cure. Treatment options are either a) deal with it, b) insert a Mirena to see if that alleviates some of the symptoms or c) a hysterectomy. Given the severity of my condition and the recurrence of abnormal cervical cells, combined with my family medical history and what happened last time with the Mirena, options A and B are not on the table for me. So here I was – 36 years old, facing a total hysterectomy and salpingectomy (uterus, cervix and fallopian tubes) and biopsies to determine the next course of treatment.
I went through a rollercoaster of emotions after I found out; anger, fear, questioning and then finally acceptance. It is what it is, and so I chose to focus on the positives that this would bring to my life, my family and me. No more chronic pain, no more doubling over in agony, no more intense hormonal issues, being able to fit into my regular clothes, and no more fear of me following in my relative’s footsteps.
I have always been a big believer that everything happens for a reason, even if sometimes I struggle to identify that reason (like with my daughter and her Perthes). However, if I hadn’t taken the time off to focus on her during her recovery, then I would have continued to ignore the new and changing symptoms due to my constant high intensity training and reluctance to take time off, which may have led to me having a complete different prognosis and outcome right now.
I had my surgery on 11th October and it took longer than expected as in addition to the removal of my uterus, cervix and tubes, my insides were completely riddled with endo, which needed to be excised, and a number of large complex cysts also needed to be removed. I spent a long time in recovery, as my heart rate and blood pressure were super low and not increasing. It wasn’t until someone thought to ask me if I was a runner that they decided to adjust the “normal” levels for me and let me go to the ward. Funny story – they actually wrote “marathoner – very fit” on my chart to explain at each handover why my vitals were always low! Lol
Touch wood, but so far my recovery has been great. I was off all pain meds after just a few days, my skin has started to clear up already, no more bleeding gums, my swelling is going down and I’m moving around really well. I am still a bit swollen, I get exhausted easily and I reacted to the glue on my cuts so I have been itching up a storm, but fingers crossed that’s all I will have to contend with and then I will be in serious countdown mode for when I am cleared for training again! I am waiting for my pathology to come back in, but my surgeon is confident everything was contained so for now I am living the “no news is good news” mantra ☺
If I can ask for you to take anything away from this, is please don’t ignore that little voice inside you, it’s called intuition for a reason. No, you’re not being paranoid and you know what, even if you are, it is better to be safe than sorry. Don’t put off getting things checked out because the timing is inconvenient – who knows if you will get another chance. Life is too short, so yes live in the moment but please try to do what you can to make sure you’re here to live the next one too.