Fibroids are a condition that will affect up to 80% of women at some point in their life. We have already talked about the signs and symptoms of the condition, but what is it really like living with fibroids?

We’ve partnered with the incredible Guidance Suite community, to share their real-life stories.

 

Key Takeaways

 

• Fibroids can have a huge impact on both your mental and physical health
• Painful periods are only one potential symptom of fibroids
• There are natural remedies that can help manage your symptoms but in many cases surgery is needed to remove the fibroids 
• Communities like The Guidance Suite can help you navigate the journey towards a happier, healthier life with fibroids and other womb health issues 

 

Dawn

 

Fibroids are typically described as non-cancerous tumours or growths found in and around the uterus. That might sound sounds quite mild, but personally I would describe them as life-disrupting masses that alter your body in ways you would never think possible; from protruding your belly, to making you infertile, to causing immense pain in places such as your legs and back.

All 18 of my fibroids have affected me physically (and to this day) mentally. I was the NHS definition of a fibroids patient. I had very heavy, painful and prolonged periods, back, leg and abdominal pain, frequent urination, protruding belly, vitamin D deficiency, low iron, headaches, nausea, and extreme fatigue. I planned my life around my periods and pain. Most upsettingly, I was rendered infertile. 

 

I managed some of my symptoms naturally with Castor oil packs, turmeric capsules, lady’s mantle, and green & raspberry leaf tea. I would also add Shatavari and Agnus castus tinctures to my herbal teas. 

 

However, I also had surgery and since having 16 removed, my life has done a 360; I don’t experience pain anymore, I feel alive and I was blessed with a daughter one year after having the open myomectomy surgery. 

 

If anyone is living with fibroids I would say educate yourself on the condition as soon as you get that diagnosis. You will be very surprised as to how you can then direct the conversation with medical professionals. Further, knowing about the various different treatment options could essentially save your womb; A hysterectomy is often the first option put on the table!

 

Henrietta

For some people, fibroids can cause no symptoms and go undetected for ages. However, for others, like myself, they can lead to significant discomfort and pain. This hidden illness can be chronic and sometimes very debilitating.

 

Fibroids have had a profound impact on my life, affecting everything from social events and work to my daily routine and mental health. I was officially diagnosed in 2021 after unknowingly suffering from symptoms for 21 years. What I once thought were "normal" issues turned out to be related to fibroids, with heavy menstrual bleeding leading to severe anaemia being the most significant. 

 

I often had weak limbs, shortness of breath, threw up from the pain, endured extended bleeding, cancelled plans due to back pain, and spent weeks recovering each cycle. Fast forward to 2024, I've had numerous iron infusions, blood transfusions, and both UAE and Hysteroscopy procedures to remove multiple fibroids. I focus on eliminating daily stressors, eating an iron-rich diet, and taking prescribed and holistic medication to reduce inflammation and blood loss. 

 

This journey has shown me the importance of education, advocacy and self-care. I would encourage anyone else living with fibroids to empower themselves with knowledge. Advocating for yourself opens doors and helps you make informed decisions, reclaiming your quality of life. Be patient and kind to yourself on this journey—you've got this!

 

 

 

Marietta 

Fibroids are a surprisingly common condition that up to 80% of women will have by age 50, Frustratingly little is understood about the causes and how to prevent them. 

My quality of life has been really affected by fibroids. I had to plan around my periods which meant not leaving the house if possible on certain days. I also felt extremely tired with anemia which then caused my hair to fall out. I had other pressure symptoms from the fibroids internally – not fun! It took time to find someone who could offer me a solution other than a hysterectomy – I couldn’t believe this was the only option so I kept looking.

I found acupuncture very helpful for the pain and I also saw a pelvic floor physio who was incredible. I really wanted to avoid surgery and tried a range of alternative methods from changing my diet to supplements to Chinese medicine. I wanted to avoid surgery but ultimately went with this to help improve my quality of life. 

I would definitely recommend finding a gynaecologist who you feel confident in and who can talk you through the pros and cons of all the available treatments – and don’t hesitate to get a second or third opinion until you find this. Back yourself – you know your body best. 

There are also super helpful communities online like the Guidance Suite where you can ask questions and get support from people who’ve been through similar things which I’d really recommend.

 

 

Rebecca 

Fibroids have turned my life upside down and this journey has had a massive impact on my mental health as well as physically and emotionally.

 

I initially had no obvious symptoms so was unaware I had these large tumours growing inside of me until they were so large I started to experience extreme pain in my pelvis, abdomen and back. I could hardly walk or function. My periods were always heavy and long but I was told this was due to the Copper Coil, however, this was actually making the condition worse. 

 

Due to the rapid growth of my fibroids, I was referred urgently to the NHS Cancer Pathway. I underwent an Open Myomectomy and had 25 fibroids removed. Rarely, a mass in the uterus that was thought to be a fibroid turns out to be cancerous - this occurs in less than 1 in 1,000 fibroids - but it’s still a risk people need to be aware of. It is not known what causes fibroids, but studies suggest prolonged exposure to oestrogen may increase your risk of developing fibroids amongst a long list of other factors.

 

Recovery has been challenging with ongoing post-op complications which will need further treatment. I have focused on diet and lifestyle changes to manage symptoms -  trying to elimate foods which are high in oestrogen and drinking lots of water and herbal teas. 

 

If you are struggling with fibroids I would definitely recommend requesting regular blood tests and scans from GP as well as keeping track of Iron and Vitamin D levels. Seek counselling to help with your mental health and lean on friends and family for support. Remember you are not alone and many women are suffering too. Gain as much knowledge as possible to help you advocate and make the right decisions for you!

 

For more support on navigating life with fibroids join the Guidance Suite Community here.