The Truth About Early Menopause
A personal journey discovering a genetic disorder that leads to early menopause
Jo Behari host of Breathe Menopause Retreats, helps women to embrace the menopause through keeping fit, eating well and feeling good.
Jo shares her story of early menopause and being a carrier of Fragile X Syndrome.
I buy products specifically targeted for an over-50’s market. In fact, due to my browser history, my computer thinks I am over 50 and often I see ads popping up for cheaper car insurance and SAGA holidays. In reality, I have only just turned 40, but three years ago I found out I was going through menopause.
My symptoms started when my youngest son was just 18 months old. I was on the pill, the same pill I’d been on for years (apart from the breaks to have my children), but it wasn’t working for me. I kept having strange intermittent bleeds or bleeds that would last weeks. I’d never had problems like that before and I just felt something wasn’t right. So I came off the pill and decided to see what my body was doing (or not doing) naturally.
I very quickly started having night sweats and raging moods. One minute I would be screaming blue murder at my kids, ready to throw something (at least not someone) against a wall, the next I would be weeping inconsolably because Marshall fell over in Paw Patrol. A part of me thought I was actually going through a serious mental health episode. I didn’t like it one bit.
I didn’t realise what was happening until I was in the gym a few weeks later, sweating profusely after a decent workout: sweating is something I’ve never been able to do. I think I might be the only person in the world to be bone dry after Bikram yoga. My PT crowed: “I’ve finally broken you, you are actually sweating!” But at that moment I realised something was seriously different about my body.
Of course, I rushed home to Google all the symptoms of the menopause and yep, I ticked pretty much every box. Low libido, dry vagina, hot flushes, uncontrollable mood swings, night sweats and my personal favourite, insomnia.
However, if I hadn’t been a little informed about my genetic make-up I probably wouldn’t have come to the menopause conclusion so quickly. After the birth of my first child, other family members discovered they had something called Fragile X Syndrome, which is a genetic disorder, carried along a family line. So we were all tested, and it turns out I’m a carrier of Fragile X.
Being a carrier doesn’t mean that I have the full-blown syndrome, it just means that I could pass it on to my children and at some point, it may develop to the full syndrome. Most Fragile X Syndrome carriers are likely to go through menopause early.
Thankfully, with genetic information on my medical file, there was no minimising of my symptoms when I went to the doctor; I was sent for blood tests and within a few weeks the results came back confirming what I already knew, I was no longer producing oestrogen. Well, I was, but only in such small amounts that it didn’t really register.
At the news, I smiled politely and thanked her. After all, she wasn’t telling me anything I didn’t already know. However, walking out of the doctor’s office that day I felt crushed. I didn’t want more children, but knowing I now couldn’t, felt heartbreaking. What do I do now?
Hormone Replacement Therapy (HRT) is a common treatment for menopause, so it was suggested to me straight away. Women are at higher risk of osteoporosis and heart disease without HRT, and for me the risk of breast cancer on HRT was minimal. At that stage, I was so keen to get back to a normal sense of reality that I jumped on the HRT train straight away. My goal was to get some mental clarity so I could look into other options in more detail.
But other options are lacking: don’t take HRT and risk having no oestrogen in the body for a very long period of time. Or try BHRT (Biological Hormone Replacement Therapy) which is tested and changed regularly according to your personal hormone production but is very expensive and, unsurprisingly, not available on the NHS.
HRT alleviated my symptoms alleviated immediately, and within two weeks I felt back to myself. From coming off the pill to getting on HRT had taken about four months. And although I didn’t like the idea of taking another pill every day for the next 15 years or more, I felt so good on HRT, that for me there was no other option. I had a four-year-old and a two-year-old that never slept. I had no time to feel menopausal!
So I embraced my newfound life on HRT, and two and a half years later I’m still popping that pill every day. Because I went into it so early, I don’t know whether that means my symptoms will also dissipate sooner, or if I’ll be one of the 10% of women who have symptoms for ten years or even longer. But for now, I’m happy with myself and with my family, which is a huge, huge relief.
March 2019