My journey with fibroids
"I had my fibroids removed 6 years ago now. It’s hard to pinpoint the exact time that my symptoms began because honestly in the beginning I didn’t even know what fibroids were. My symptoms just slowly increased every month. It was more towards the end of my fibroids journey when my periods got really heavy and I had anaemia and other issues that I realised that something was really wrong. My mum also had heavy bleeding and so I didn’t think that this was something to cause alarm. Altogether, it took me about 2-3 years to get my diagnosis, from when I knew that something was wrong.
When I first saw my GP I was advised to go onto the contraceptive pill as she told me that it’s very effective. I expressed to her that I didn’t want to go onto the pill and I felt really unsure about where I can go from here and didn’t feel a lot of empathy or support from her. I left the appointment feeling really frustrated. I was advised to revisit in a number of months and things would be investigated again from there, so that’s what I did.
On my next appointment I did a blood test which showed that I had severe anaemia, so they knew that something was wrong. I asked if I could do further tests with scans so I was given an MRI. At the time, my MRI was barely looked at by my GP, she saw that I had fibroids but didn’t view them as anything alarming, maybe because they’re so common in people. Again I was recommended the contraceptive pill, or the mirena coil. I rang a recommended a doctor who could insert a mirena coil but after speaking with them I decided to get a second opinion.
From there, I went to the Dublin Well Woman Centre and described everything that was going on with my health. Again I was recommended the contraceptive pill and I had to explain that I didn’t want this, and my scan shows that I most likely have fibroids. My scan was sent to the Well Woman Centre and after taking a look at it, they informed me that my fibroids were very large and action needed to be taken on them.
From here I kept pushing for further investigation, after being put on medication to help my heavy bleeding, which in fact did the opposite. I eventually was referred to a specialist. Thanks to having health insurance, I was put in touch with a great fibroids specialist and after walking into his office he told me that he could actually see the fibroids through my clothes, they were that big! Firstly they shrunk my fibroids because they were too big to remove immediately, and then a year later I had my surgery to have them taken out, which was the best decision I could have made."
Living with fibroids and quality of life
"When I think back to how I dealt with my fibroids, for that week of my period every month I can only describe it as ‘survival mode’. I would be in a constant state of washing clothes and sheets, I would have alarms set during the night to change my period products to avoid leaks, it was so full on.
I didn’t want my period to hold me back so I would just carry on with life as normal, I would meet friends, I would attend all of my work meetings, I just did it all and didn’t think about it. When you’re in the moment you don’t take a step back to process what is actually happening, you just want to make it through the day, week, month, so that’s what you focus on."
What changes do you think can be made to support people with fibroids?
There is a lot that can be done to support those living with fibroids, across three main areas: awareness and education, research and development, and work policies. Here, Justyna lists the most important.
Increased Awareness and Education:
- Healthcare Provider Training: Ensure that healthcare providers are well-educated about the latest fibroid treatment options and management strategies.
- Patient Education: Provide comprehensive information about fibroids, including symptoms, treatment options, and potential impacts on quality of life.
- Accessible and Affordable Treatments.
- Insurance Coverage: Advocate for insurance policies that cover a wide range of fibroid treatments, including non-surgical options.
- Specialized Clinics: Establish more specialized clinics focusing on women's health, particularly fibroids, to provide expert care.
Research and Development:
- Funding: Increase funding for research on the causes, prevention, and treatment of fibroids.
- Clinical Trials: Encourage participation in clinical trials to find more effective and less invasive treatments.
Workplace Accommodations
- Flexible Work Policies and Remote Work Options: Allow remote work options for those who may need to manage symptoms from home.
- Flexible Hours: Implement flexible working hours to accommodate medical appointments and periods of severe symptoms.
Do we see public attitudes changing around fibroids?
I do see so much more information being shared now than there was before. It’s hard for me to say if there is more effective education on heavy bleeding conditions such as fibroids, because I work in this industry and I’m so connected with what is going on. But, I do feel that if I was to step outside of my echo chamber I could say that there is so much more education and conversations happening on this topic.
A final word for other fibroid sufferers
I would say that you don’t have to just accept this. Your GP may push solutions on you, such as taking the pill, which could be effective but that doesn’t mean that you have to put it into your body. You can push for it to be investigated and you can have them removed, depending on how large they are and where they’re located. Of course any surgery comes with its risks, and in some cases in can impact your fertility, so you need to do your own research on that and decide if it’s the right thing for you along with an expert. But you don’t have to just live like this.