My journey (which I can only describe as hell) started 22 years ago when I was about 15/16 years old. I’d noticed my periods weren’t regular, and I was bleeding more heavily than usual. I was also passing clots, which I could feel when I was out and about with my friends. I was so anxious and embarrassed. My mum took me to the doctor to try to get to the bottom of this. We were abruptly told it’s nothing to worry about, and I was put on the contraceptive pill.
This made my symptoms worse and played absolute havoc with my hormones. I was literally a nightmare to live with! So back to the doctors again, only to be told again it’s normal and to try another brand of contraceptive pill. This went on for over a year, back and forth, being told “there’s not much we can do” and “you are just one of the unlucky ones.” They put me on the implant, which again had no relief for me, but by this time, I admitted defeat. I’d already been told there’s nothing more we can do by a medical professional, and they know what they’re talking about, right?
My symptoms got worse over time, pain and swelling in my tummy that made me bed-bound for days, bleeding so much through my tampons, pads, and clothing, I was depressed and incredibly hormonal, constantly having to take sick days or cancel plans. In fact, the only relief I got was when I became pregnant with my two boys, but little did I know things were about to get worse.
Everything got progressively worse after 2014/2015. I was bleeding so much that I was told I was anemic, but instead of looking into my symptoms, I was just given iron tablets. By this point, I was bleeding through tampons, pads, and my clothing within half an hour. I used to stay in the bathroom, afraid to move off the toilet or curl up in a fetal position with a towel on the bed. And again, back and forth to doctors until finally they referred me for an examination.
“Finally,” I thought, this might be the beginning of answers. I knew none of this was normal, but when medical professionals are dismissing you and treating you like a drama queen, what can you do? I had a male doctor perform an examination, which showed a fibroid, but in his words, “It’s nothing to worry about, it’s not the cause of your symptoms, and it’s not something we would look into removing”. So I left completely disheartened, no further forward, and by now even more depressed. I felt like a failure to my children and husband, I couldn’t be myself, lord knows I tried!
I put on a smile and tried my best to plan activities and create a happy home for my family, but inside, I was drowning. 2024 saw another traumatic experience when I was diagnosed with Hyper Mobile Ehlers-Danlos Syndrome, but this also gave me the push I needed to start advocating for myself. I started documenting my symptoms, learning more about my condition, and using social media as a positive tool to journal and vlog.
I discovered that with hEDS being a connective tissue disorder and with connective tissue literally being the glue that holds your body together, my organs were probably not in the correct position, which wouldn’t be helping. I was eventually seen by a lovely female gynaecologist who pulled up my entire medical history, reading through everything. She shook her head as she read my medical history and listened to me break my heart to her. She told me I should have been seen a long time ago and was disgusted with how I had been treated. We discussed the possibility of a hysterectomy, but there were also other options. But for some relief, I could be put into a medical menopause. I agreed, and the next step was to have an ultrasound.
The Ultrasound showed I had a large Pedunculated Fibroid. These types of fibroids are attached to the uterus by a stalk. Unfortunately, the ultrasound didn’t show what else was happening, and after almost bleeding to death on the side of a motorway, I knew a hysterectomy was my only option. On the way to a fashion show in London, my husband had to make the long 4-hour drive from Newcastle, and of course, I’d started bleeding heavily the night before…typical! I sat in the bath, washing myself down, hoping and praying it would settle down by the time we had to leave in the morning.
Stress makes all these symptoms worse, and as I was participating in this show and had a huge swollen tummy, you can imagine how stressed I was feeling! We were about two hours or so in when all hell broke loose…literally! I was gushing blood while I was driving, I was covered, and the pain was crushing, like my stomach was being torn from the inside. We pulled over at the nearest rest stop (thankfully, it was quiet), my husband helping me out of the car, and I felt everything drop. My legs were so weak I could barely walk. By the time I got to a disabled toilet, it looked like a crime scene. I was basically giving birth to clots larger than my hand!
I could not believe what had just happened to me, and in hindsight, we should have called an ambulance. But, forever being positive, I cleaned myself up as best I could, had to throw away my pants and leggings, and then had to clean the car seat. We decided that we should get to the hotel, and at least I would be safe there. This was the last straw for me, and when we got back to Newcastle, I took action. I’d already been referred to a fibroid specialist, so when I spoke to my gynaecologist and filled her in on my nightmare motorway experience, she got things in motion for the medical menopause pretty quickly. I have to get an injection called Zoladex into my tummy every four weeks. The relief is incredible! I could go back to the swim club, go to the gym, spend time with my family, and I will be forever grateful.
A medical/forced menopause and combined HRT come with their own issues, hot flushes, insomnia, night sweats, just to name a few, but I will take it all over the symptoms I had before. My gynaecologist and fibroid specialist referred me for an MRI to get a better look and decide which kind of surgery would happen (keyhole or open), as the fibroid is very large. The results were both heartbreaking and a relief.
My MRI showed I have Adenomyosis and two large fibroids, one of which has been haemorrhaging internally! There is no other option now; a hysterectomy is the ONLY option. I sat there for what seemed like hours with my letter, reading it over and over, thinking back over the years of excruciating pain, the swelling in my tummy, bleeding so much to the point of anemia, the number of times I’d had to call in sick at work, and cancelled plans with friends. I’m now waiting on an appointment date for my hysterectomy.
I can’t tell you how much I’m looking forward to getting my life back, and actually living instead of surviving.
Siobhan is a British/Maltese Swimmer and Performer living with a multitude of chronic health conditions. Growing up, she was always in an activity or sport.
She’s always been a swimmer, and loved the sport so much she became a lifeguard and swim teacher.
She even did my PADI Mermaid course to become a certified Mermaid! Dance and gymnastics are a huge part of my life too. In 2024 she was diagnosed with Hyper Mobile Ehlers-Danlos Syndrome as well as its co-morbidities Mast Cell Activation Syndrome, Chronic Fatigue, and FND.
She has to take medicine before eating anything, pace herself, plan everything she does, as well as be a mama bear and wifey! She’s a huge believer that everything happens for a reason, that there’s a reason she found out about her illnesses at this point in her life, to help others on their journey through chronic illness.