Our next VIP Mutant, Krista, talks to us about how she felt completed unprepared for the impact her surgery had on her body and brain. Krista discusses the importance of Hormone Replacement Therapy, and how vital it is to know your rights – not all medical professionals will give you the right advice. Do your research, and get a second opinion if needed.
I found out I had BRCA1 gene mutation the day after I turned 41. I was already in early menopause, my surgeon recommended that I have a hysterectomy and oophorectomy, I figured “sure why not? Nothing is working anymore anyway”.
I left the hospital after 3 days armed with physio exercises and a list of do’s and don’t’s. When I got home I immediately asked my husband to have a look at “my bits”. My vulva felt like it had disintegrated and I was left with just some skin over my public bone. He confirmed my fears and we both wondered what the hell had happened to the fleshy plump vulva I entered the hospital with only days before? It was also very dry and itchy, which was a complete nuisance altogether!
Over the next few days I got really bad headaches and hot flushes followed by a shivering cold feeling after. I was no longer sleeping, the hot flushes were worse at night and more frequent. I’d wake every hour drenched in sweat and freezing cold.
My eyesight got worse and my eyes were dryer than usual. I kept loosing my train of thought and was finding it difficult to speak, it felt like my brain was no longer connected with my mouth. I kept forgetting things, I actually thought I had Alzheimers.
By week 2, my only emotions were sadness and anger, which I flipped between. One moment I was crying uncontrollably and then I was flying off the handle with anyone who happened to be near me (mostly my poor husband). I felt totally irrational, with absolutely no control over it whatsoever, I felt like I was going insane.
By week 3, I had to do something. My sister had mentioned that her surgeon had spoke about Hormone Replacement Therapy when discussing her BRCA prevention surgeries (my surgeon never said anything to me about it) . So, I contacted my GP who said “no way, you can not have it because of BRCA”. I then contacted my BRCA nurse who said “Yes, you can definitely have it!!”. With the conflicting answers, I thought I better speak to a specialist. He confirmed what the nurse said,, I could take HRT. He asked me a few questions and also suggested that I get an oestrogen vaginal cream.
Turns out, I had vaginal atrophy (the mysterious disappearing vag, the itching and dryness) caused by the lack of oestrogen. After only one week on HRT and using the cream, I got my vulva back, nice and plump with no symptoms, YAY! All my mood swings stopped completely too, I’m now 100% back to normal, no more psycho bitch! (yes my hubby is delighted too).
There are lots of benefits to taking HRT; to maintain bone density, to decrease progression of heart disease and dementia. I take oestrogen only HRT because I have no womb. Oestrogen only HRT actually decreases your risk of breast cancer (which us mutants like to hear). There is a big campaign for all GP’s to be properly trained, with up to date information on menopause and HRT, after all it effects half the population at some point.
Any BRCA ladies out there preparing for your preventative surgery, have a chat about HRT with your doctor, arm yourself with as much information as possible and don’t be caught out like me, hormones are important.
Disclaimer, I’m not a medical professional always seek medical advice from a professional. End.
Thanks SO much to Krista for sharing her experiences without HRT. It shows it is so important to get things right, don’t be afraid to get a second opinion. Follow Krista @thebrcaflattie on Instagram, and pop any comments in the section below.
