Carina H’s story

I was diagnosed with fibroids in 2017.  At the time I accepted my heavy periods as normal, but I knew something wasn’t right due to a lump I could feel deep inside my abdomen. At first, it could only be felt when I was approaching my period but, over time, my symptoms grew a lot worse.

At the worst points, I wouldn’t leave my home when I was on my period as I’d need to be near a toilet.

I would be changing period protection up to every 20-30 minutes throughout the day and also at night. This had a big impact on my sleep.  I would wear a moon-cup, cloth sanitary pad and period pants to deal with the blood loss, but would still have frequent flooding.

Fortunately, due to the lump and concerning symptoms, I was referred, seen and diagnosed pretty quickly. However, I was informed fibroids aren’t really anything to worry about due to them being non-cancerous. I was told they were more prominent in people from Afro-Caribbean backgrounds, but not given any reason for this. I was told that a hysterectomy was the most common course of action but because I wanted to have children, this was put on hold. Instead, I was put on medication for 3 months, but it didn’t help. I was sent for an MRI in November 2017 and found out at a GP appointment in March 2018 that I’d been discharged without any follow up or results from the MRI. This was just the first of many incidents where I had to advocate for myself in order to access the healthcare I needed.

My first surgery in October 2020 removed a small fibroid within the uterine cavity. This procedure had previously been cancelled and re-booked, and only took place after I raised a concern. By 2022, my symptoms were a lot more prominent and included daily back and hip pain, a visible lump and distorted bloated stomach, heavy blood loss, anaemia, incontinence, difficulty breathing, and escalating anxiety. I had a second operation, an open myomectomy (where bigger fibroids are removed via a large cut in the abdomen) which removed a further 11 fibroids, the biggest 3 each being about the size of a small orange.

Again, this operation was the result of me constantly chasing the clinicians, and submitting PALS complaints. Every time I called to ask about it, I was told I wasn’t a priority. It was extremely distressing and my mental health was very low. I was a completely different person during this time and incredibly stressed, which made my symptoms worse. I was very worried about delays because of the age-related cut-off point for fertility support. I had to constantly call and email both the gynaecology departments and the fertility clinic to explain as there was no communication between the two.  Had I not been trying to conceive, I’d have waited much longer for my fibroid operation.

I’m now nearly 3 years post open myomectomy and the remaining fibroids have grown, with the largest being around 4cm. It is also suggested I have adenomyosis, which causes bloating and pain.

I wanted to share my story and be a FTWW Champion for Fibroids, as they are an incredibly common gynaecological condition, but they are almost always overlooked. Unless people have been suffering with fibroids, they have no idea what they are and the effect they can have on a person’s body and quality of life.  It’s sad how little research has been done on fibroids and how little help the professionals have given me since I’ve been diagnosed. Everything I know is from hours of research, talking to others, and getting support online.  I am keen to change this for all the young people growing up, and give them the confidence they need to advocate for themselves.