Fibroids and medical disbelief

8 August 2016.

My fibroids remained undiagnosed for over 12 years, because my doctors did not believe me as a 10 year old, when I first told them about the severity of pain & bleeding I was experiencing.

I would bleed through a night time ‘superpad’ in a couple of hours and the pain was so severe that I stopped eating during my periods to avoid needing to go to the bathroom- passing waste was excruciating. This meant that at times, I would be weak from anaemia and hunger. I remember that my GCSE exams were an awful time- I was so stressed, hungry, and in pain- I’m sure it affected my performance.

I went on the pill, which alleviated the heavy bleeding symptoms, but unknowingly increased the size of the fibroids (since they thrive on excess oestrogen).

And so, the pain problem continued for many years. One doctor suggested that the issue was piles (haemorrhoids) and I was given medication and pain killers. The pain was still severe so I was referred to a gastroenterologist, who performed a colonoscopy. It was only then that he realised that there were large growths, but that they were in the vagina, not the colon.

I was finally referred to a specialist in obstetrics and gynaecology, at age 23. He asked me to explain what I had been through. When I told him, his face fell and he apologised on behalf of those doctors who do not listen to young women when we complain about menstrual issues. It was then that I realised that I was finally going to be treated for my troubles.

After so many years of pain, anxiety about my health, anaemia, weight loss, expense (think how many pads my mum and I had to buy!) and feeling disbelieved about my problem, it was great to finally have a diagnosis. The fibroids were removed (known as myomectomy) and although they grew back, they are smaller and are regularly monitored, to prevent them from causing me problems. 

I had always kept a diary and recorded my symptoms, which helped the doctors to chart what was going on, it was simply their disbelief that a child could have fibroids that prevented them from making the correct diagnosis. The diary was most useful for me, too- it helped me to prepare (as much as I could) in advance of getting my periods. I also find that keeping stress to a minimum, helps so much.

– Anonymous, UK.