From Symptoms To Answers
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.
Thank you for bravely sharing your story lovely. One thing I dislike about doctors is that it’s so hard to get them to refer you for scans, etc., for anything. I really hope you get an operation date for your hysterectomy soon, sending you best wishes x
Lucy | http://www.lucymary.co.uk
oh wow! I am sorry to hear about what you’ve been going through. This is definitely very tough. That said, your courage is very inspiring, very! I am glad you’re on the way to recovery. Best wishes for your operation.
I am very sorry to hear about your painful experience, but so glad that you’ll soon be having a hysterectomy and all of that will be in the past. It’s so important to advocate for your own health as you did!
Thank you for sharing such an honest and courageous journey through years of confusing and painful symptoms. It really sheds light on how hard it can be to advocate for your own health when you feel unheard. Your persistence in documenting your experience and seeking answers offers hope and validation to others who might still be struggling in silence. It’s empowering to see how you turned frustration into action, and I’m inspired by your strength and resilience.
Thank you so much for sharing your journey. It’s been so long and fraught! I’m glad you’re finally on your way to healing.
Thank you for sharing such a vivid and honest journey from years of confusing symptoms to finally finding meaningful answers. It really highlights how complex and exhausting chronic health challenges can be. Your story shows how persistence and listening to one’s body can lead not just to explanations, but to empowerment and hope for others walking a similar path. This kind of vulnerability and insight is so valuable because it reminds readers that they are not alone in their struggles and that understanding takes time, courage, and resilience.
Oh my gosh, I am so sorry you went through this. Thank you for sharing your story. I know it can help so many others going through the same thing. I am glad to read things are improving for you.
I am so sorry for all the pain you had to go through before finding out what really is going on. I am glad to know that you are okay and that you found the help that you need.
Maureen | http://www.littlemisscasual.com
Thank you for sharing this. Your reflections about moving from confusion to understanding really hit home and encouraged me to keep seeking answers.
My heart truly goes out to you reading this. No one should have to fight that hard just to be heard. The strength it must have taken to keep pushing through the pain, the exhaustion, and the constant dismissal is unbelievable. I cannot even imagine how scary that motorway experience must have been. I am so glad you finally found a doctor who listened and took you seriously. Advocating for yourself is not easy, especially after years of being told it is nothing. Your honesty and courage in sharing this will help so many other women feel less alone. I am praying your surgery brings you the relief and fresh start you absolutely deserve.
I was diagnosed with Adenomyosis in 2024. You were describing exactly a few things I dealt with before my diagnosis. My periods were very painful and heavy. I went to the er because I felt like I was in labor one day. I was told then it was a fibroid. The gyn I was seeing tried to insert the Merania iud. My body instantly rejected it. Then they had me try depo shot and I bleed lightly for months. I was fed up. Finally the put me on progesterone and it did the trick. No more heavy bleeding (actually none at all) and zero pain. You might give it a shot unless you’re open to surgery and having your uterus removed. I don’t want that at this point.
I also have fibromyalgia, chronic back/hip pain, and rheumatoid arthritis.
It is truly exhausting when you have to fight just to be heard by doctors. Those years of being dismissed while managing so much pain must have been draining. You are incredibly brave for finally advocating for yourself.
This is a lot to deal with, and it sounds frustrating that doctors did not have the answers. Hopefully, you will be done with the pain.
It is such a relief that you finally found a doctor who truly listened to your history and validated your pain. Those terrifying moments on the motorway show why taking control of your health decisions was necessary.
Wow! Such an amazing program and advocacy to help every individual regarding this kind of matter
I think too many women are brushed aside and told things are normal when clearly they are not. I am glad you found someone who actually listened to you in the end.
Such a beautiful and inspiring story to share, I am proud and glad that despite of that you keep your faith stronger and you keep your mind positive
Oh wow that does sound like a very distressing experience. It’s good to hear that they eventually worked out what was happening and could help. I’m glad that you are now back on track and are able to doing things you enjoy.
Thanks for sharing your experience. Dealing with unknown health issues is so stressful. Not knowing what is going on is terrible and even worse when you can’t find a doctor who actually listens to you.
Reading your story makes me sad but at the same time I am proud of you for facing that challenges in your life.
WOW, I’m so sorry! My heart truly goes out to you reading this. No one should have to fight that hard just to be heard. The years of pain, being dismissed, and still showing up for your family takes an incredible amount of strength. I cannot even imagine how terrifying that motorway experience must have been. I am so glad you finally found doctors who listened and took you seriously. Sharing your story like this will help so many women realize they are not alone and that they deserve answers too. I am praying your surgery brings you the relief and fresh start you so deeply deserve.
Wow, that’s so much to go through, and I hate that it took so long to find the answers. Hopefully the hysterectomy will help solve so many of the problems.
I am so glad to hear that finally you got solution for your symptoms. Please take good care of yourself!
I’m so sorry you’ve had to go through all of this, it’s scary what can happen when medical professionals don’t take you seriously and really investigate what could be going wrong. I hope having a hysterectomy puts an end to your pain, and hopefully you get your date soon x
I am so sorry that you had to wait so long for a proper diagnosis and much needed treatment. Your story is really medical malpractice and in the USA, those doctors would have been sued for same.
You are very fortunate to have survived such horrific delays and I send you healing love and blessings.
This is why women should be advocates for themselves and others.
Oh wow – thank you fro such a detailed article! What a joy it is to see people opening up on what they really care about – helps so many others in the same boat.
This was such a powerful and transparent article! Thank you for walking us through your journey from confusion to clarity with so much honesty and courage.
It is horrible that it took you this long to get answers! Clearly, something should have been done much sooner. I am glad you are on the road to healing now.
Wow what a story for sure and I so appreciate you sharing it with us. I am glad that you have gotten your life back and finally received the care you needed to fix the issue. I had a period like that one time…. and it was when covid hit in 2020 and everyone was on lockdown at home….. and it was HEAVY. Like by the time I made it to the bathroom it was running down my legs and there was a trail on the floor. I had to change the tampon and pad every half hour too. It finally did pass and I have not had one like that since but I cannot imagine having that every time I had a period. It is sad that so many blow it off not truly listing to you and glad you finally found someone who did and you got the help you needed. Thank you for sharing your story!