The story of Clare
When I was 17 some appeared on my leg, I went to see a dermatologist and he told me they where glomus tumours and we left it at that. Then in my early 20s my periods were horrendous and my tummy was lumpy, I searched on the Internet and found that it might be fibroids. I went to see my doctor who confirmed as that’s what it was, They caused pain and hot flushes and made me tired. When I was 28 I had my first operation, and myomectomy as because I haven’t completed my family I hysterectomywas out of the question according to my doctors. Even though I didn’t want to take the risk of getting pregnant because my uterus was a mess. The fibroids be aggressive and after two years they returned with a vengeance. Then I had uterine artery embolisation,and I thought that was the end of it, but it wasn’t and after three years I still had an A fibroid on a stalk on the outside of my uterus. By this time I have moved to a different city, and I saw a different consultant who agreed finally to give me a hysterectomy which would finally end fibroids. I thought that was the end of the love affair with mum with hospital however it wasn’t the case, four years later I was searching for reasons why I’m still getting a lot of these lumps on my body the ones that I went to see this specialist about when I was a teenager. I knew that my dad had them too but I never put two and two together until I started researching on the Internet and discovered HLRCC. I emailed somebody at the HLRCC site and asked them for advice, he told me to contacts gp and ask for a genetic text. My doctor was a good listener and did what I asked and sure enough when I saw the geneticist he confirmed it was HLRCC just from the presence of the lumps which I now know as leiyomyoma. I know it can’t be cured but now have the support of HLRCC and get a scan of my kidneys every year which is all the help I need. It’s been a long journey to diagnosis but now I know what’s what I can deal with it
Connect with others on the international HLRCC community:Â https://www.rareconnect.org/en/community/hereditary-leiomyomatosis-and-renal-cell-cancer