Dawn Heels suffered terrible issues with fibroids for years, before finally having 16 fibroids removed through an open myomectomy at age 39. During the course of her 6 year ordeal, she saw her quality of life greatly decline and also had trouble conceiving- all the while, doctors downplayed her fibroid related symptoms.
Following on from her experience, the UK based Lawyer set out on a mission to raise awareness on fibroid disease- particularly to amplify the voices of women suffering with fibroids in the UK.
Read on for her journey from diagnosis to fibroid removal and perhaps you too may agree ‘Determined Dawn’ fits her person.
In 2016, when I was 33, I was working for a company that was causing me a lot of workplace stress. I was enduring a toxic working environment, workplace bullies and feeling nervous about walking into the office each and every day. I had never felt so low in a place of work in my life.
Around that time, I started to experience a dull pain in my lower, left abdomen but dismissed it as maybe being some new type of period pain or workplace related stress. A few weeks went by without relief, so I made an appointment with my doctor. When I saw him, he said that it was probably related to my cycle and that there was nothing to worry about. I went home and a couple more weeks passed with the same pain, so I made another appointment and was told the same thing.
Something just didn’t feel right, so I made an appointment with a female doctor. When I saw her, she said casually that it sounded like I had a cyst on my ovary. I panicked at this news because all I heard was cyst and ovary, not knowing the real implications of what that meant but knowing that I didn’t want anything to impact my ovaries as I had not yet had children. The female doctor said she would refer me to the hospital so I could have an ultrasound to confirm her suspicions.
A further few weeks went by, and I was finally able to attend hospital to have my ultrasound. During the examination, I was told that my ovaries and uterus looked healthy, but I had 2 fibroids (4cm big). I was like fibroids?! She said yes. I tried to ask her what they were, but she told me to make yet another appointment with my doctor who would explain everything. In the UK, we have very limited time with health professions and so are hindered when it comes to answering questions, unless your treatment / appointment has been paid privately (which is less common in the UK). My mum, who has always been transparent with health conditions, had had fibroids when she was pregnant with myself and had shared her story with me, but when you’re in shock, you can forget details around you.
I went back to my doctor, he told me that fibroids were common, not to worry and to take painkillers if the pain get worse. I was sent on my way.
Over the course of the next 5 years, my symptoms got worse, alongside developing additional fibroid related symptoms.
- I suffered with painful, heavy periods (something I had been suffering since I was a teenager (I was put in the contraceptive pill to combat such but got progressively worse)),
- My periods were full of clots which were painful to pass
- Bum cheek pain
- Leg pain
- Frequent urination
- Lower back pain
- Extreme bloating with a protruding stomach and abdominal/ pelvic pain on the left-hand side.
Nearer to the end of my journey (my fibroid journey lasted 6 years), I started to experience symptoms which mimicked early signs of pregnancy. I kept going back to my doctor but kept getting dismissed as the fibroids being normal and there was nothing to worry about. At my wits end, I asked the doctor to refer me to a specialist gynaecologist as this really didn’t feel normal. The fibroids were affecting the quality of my life.
- I would plan life around my period,
- I would be constantly visiting the toilet which became hugely embarrassing (especially when I was at work)
- People didn’t realise sympathise with me when I said my period pain was bad because we are all conditioned to think period pain is normal, which it was not.
- My back was in constant pain which made it harder to do normal day to day activities
- My once flat stomach begun protruding despite me leading an active and healthy lifestyle.
Confused as to what was happening to me, I was relieved when my referral to the specialist was accepted.
You have to be your own advocate when it comes to your health.
At this point (year 4/5) I was considering starting a family, but nothing had been happening for me. A transvaginal scan was performed showing that the 2 fibroids had grown from 4cm to 6cm. The specialist wanted to send me off to initiate fertility investigation, but this made no sense to me as the pains throughout my body persisted. The pains got so bad that one Saturday, I ended up seeing an emergency doctor at the hospital because I was in so much pain. I couldn’t take it anymore.
At my new place of work, I happened to open up to one of my colleagues about what I was suffering with. She reminded me that we had workplace private insurance, and it would be worth seeing if I could get the issue sorted through them. In November 2021, I had my first consultation with a consultant who LISTENED to me. I had another transvaginal ultrasound which revealed that I actually had at least 6 fibroids; the largest being the size of a grapefruit (this is the one that made me look pregnant). He took the time to explain where the fibroids were located which, in his opinion, were rendering me infertile, how big they were and that they were the source of my suffering. He therefore suggested that I undergo an open myomectomy to remove the fibroids. When he told me this news, I went into shock as I knew I would probably have to have an operation, but I never thought it would be an open myomectomy. I also had some fertility tests to check my egg reserves, etc; thankfully, everything was fine. On returning home, I cried my eyes out. I was angry at the doctor who dismissed me for years to the point where I now had to have major abdominal surgery. I was angry that I knew something was wrong but was dismissed for so many years. I was 39, wanted to try for children as soon as possible, was in pain and to find that after my own research, this was the best option for me.
In January 2022, I had not 2, not 6 but 16 fibroids removed! The specialist left 2 minor fibroids in to give me an opportunity to conceive thereafter, due to their location (they don’t like to cut away too much of your uterus). I unfortunately had to have an emergency blood transfusion a few days after my operation, as I had lost so much blood and became unwell.
Seek a second, third and fourth opinion if you’re not happy with what you’re being told.
In March 2022, I shared my story with my following on Instagram and this was mainly to do with the fact that not many UK voices were speaking out about fibroids; all my information had come from women and guidance in the U.S. In July 2022, I decided to amplify the voices of UK women who had or were going through their own fibroid journey by undertaking a number of Instagram Lives. This was done for Fibroid Awareness Month. Since then, I have become a fibroid advocate, spreading awareness and providing education mainly on my Instagram platform. I’ve also continued to also do lives with fellow fibroid warriors and experts. I also hold a monthly fibroid and other womb issues support group, where women can come together in a safe space, seek guidance, listen, vent…whatever they need. I have also been blessed to speak on radio and podcasts about my own fibroid story.
It’s so important that more people know about this condition, so that they don’t suffer for as long as I did. My advice for women is to really advocate for yourself. Seek a second, third and fourth opinion if you’re not happy with what you’re being told. Always seek the help of a doctor/consultant that you feel comfortable with and trust. If you feel uncomfortable and/or dismissed, change doctor.
I’ve turned my pain into purpose and I’d be happy if at least one person benefitted from my experience.
Connect with Dawn on Instagram @dawn_heels
For further information, guidance and Support:
British Fibroid Trust is a UK based voluntary not-for-profit patient support Group which is run by volunteers. They provide balanced information, independent of health care provider’s interests.