My story Part 2

Read ‘My story Part 1’

So I was taking Zoladex, the menopause-inducing drug, for 6 months. And during that time, something amazing happened. My symptoms went into complete remission. I didn’t have a single day of feeling unwell. In fact, I discovered a new level of ‘well’. I had oodles of energy, I started a bunch of new hobbies and I experienced what it is like to not have to wake up and contemplate how sick you feel today, but to just get up and go, knowing that you’re NOT sick.

Zoladex was a blessing and a curse. GNRH analogues are licenced for use up to 6 months but no more, because of a long list of risks (the big one being osteoporosis). So after 6 months it was stopped, and my cycles were instead suppressed through a double-hit of progestins: the progesterone-only pill (AKA the mini-pill), and the Mirena coil. But a couple of months after my last zoladex injection, I got sick, and this time it was much, much worse. I was permanently sick. There were no periods, no cycles, and no let-up from the symptoms, just a constant existence of sore throats, fevers, swollen glands and fatigue.

It was at this point that I really started to take some control of my knowledge. Working in academia, I used the sources I had available to investigate the scientific literature, to try and understand what my symptoms could be and why they were happening. Since I had got so much worse on high doses of progesterone, my reading led me to some research on progesterone intolerance. Specifically, women with PMS are thought to be intolerant to  progesterone, and oestrogen therapy can be really helpful for them. It didn’t fit my symptoms – I’d never really experienced PMS – but it still seemed like it might be relevant. I asked for my Mirena coil to be removed and stopped taking the mini-pill. I didn’t know what was happening in my body, but I did know that all this progesterone was doing me more harm than good.

I felt at this stage that I had exhausted all the help available from the NHS, and decided to seek help privately. After many weeks of researching, I found a privately practicing doctor who specialises in both women’s hormones and medically unexplained symptoms. At the end of 2015 I had my first appointment with her and instantly felt reassured by her extensive knowledge and understanding. She felt that my symptoms were likely to be viral in nature, and she explained how the immune system is differentially activated and suppressed by different female hormones.

In December 2015, 11 years after first becoming sick, I had a diagnosis. The psychological impact was HUGE. A diagnosis means you can research, you can make sense, you can explain. Prior to that, I felt like I was lost in the middle of the desert, with no idea how to even begin getting myself out.

I had high levels of antibodies for the Epstein-Barr virus, and the combination of antibodies showed that I had been infected with it a long time ago, and that it was reactivating. My bloodwork also suggested that I had PCOS – Polycystic Ovarian Syndrome. My oestrogen levels were that of a post-menopausal woman and my testosterone was high. I was started on a drug called Metformin which is used for diabetes, but is also given to women with PCOS since evidence suggests they are insulin-resistant. In addition, I was given bioidentical oestrogen to try and get my oestrogen levels within the normal range for someone of my age. The hope was that by balancing my hormones, my immune system would be able to take control.

A ‘where I’m at now’ post to follow…


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