Emily was plunged into perimenopause after the birth of her twins, as a result of Premature Ovarian Insufficiency (POI). Despite her diagnosis, she struggled on for months until her GP was prepared to prescribe the right type and dosage of Hormone Replacement Therapy (HRT).
“Shortly after the twins were born, I realised that I was in a bad way. At the age of 29, I was rapidly heading into the perimenopause – and my symptoms were becoming unbearable. One in 1,000 women go into menopause under the age of 30, when their hormones unexpectedly run out. I feel fortunate that I knew an early menopause was on the cards for me, as my mother was diagnosed with POI at the age of 30. I’d pushed for investigation for many years, and received the same diagnosis before I had my first child. Luckily it was picked up early, and I was advised to start a family as soon as possible.
I had always thought of POI as a fertility issue, and never considered how the hormones might affect every part of me. I knew all about the emotional rollercoaster after having a baby, but this was different. When the twins were around three months-old, I started feeling terrible; I was exhausted. I was waking up at night, dripping with sweat, and my period came back so heavily I needed a tampon and a pad – and I’d still find the bed sodden when I had to get up to feed the boys. I couldn’t think straight; I felt like I had a bag over my head all the time. It was really, really hard. I felt that I could deal with the physical stuff and get on with it, but when my mood started to deteriorate I knew that I needed help. My self-esteem was so low that I hated every part of me, and I know I was difficult to live with.
In lockdown, I could only talk to my GP on the phone, and I was refused HRT when I asked for it. My GP just wouldn’t accept that I was menopausal, despite my diagnosis of POI – even though my symptoms were just screaming ‘menopause!’ I accepted this for a few more painful months, but then I became desperate. I called the private doctor who had helped me conceive my twins, and I was prescribed a combined contraceptive pill, which contains estrogen and progesterone. Sometimes this is enough for girls with POI. I tried this for a few months, but my mood became really low and I was ready to go on antidepressants. I was bed-bound every afternoon with terrible nausea, and even though we were in the middle of COVID, I sometimes had to ring my mum and say, ‘Come over, I can’t cope’.
I rang my private doctor a few months later, and she could hear in my voice that the pill wasn’t doing enough for me. I was put on Oestrogel, and in three days I was a different person. My eyes were stinging when I looked out into the garden at the sunlight – I realised it was because I’d been seeing in black and white for so long. I will never forget that feeling.
When the twins were just over a year old, I went back to work part-time after an incredibly tough 12 months at home. It was a relief: I could sit down and rest. I used to find it exhausting getting to the top of the stairs carrying the boys, and felt like I needed to lie down. Like many younger women on HRT, I needed a much higher dose of estrogen to bring me up to normal levels: six pumps a day, compared to two or three in an older woman. But once my GP agreed to prescribe the Oestrogel, she wouldn’t prescribe enough, or any testosterone which also drops at menopause and would have helped with my energy and memory, as well as libido. Thankfully, my private doctor sent various letters to my GP, and eventually they prescribed testosterone too.
I don’t blame the GP that I saw in lockdown – most of our friends are doctors, and she just hadn’t been properly informed about HRT and POI. What I find most unbelievable is that I had already seen a private doctor who had diagnosed my POI, and it still wasn’t taken seriously.
I still don’t feel a hundred percent, and I’ve had a bumpy road with HRT, including progesterone intolerance, which was agony. The progesterone gave me so much bloating that my pregnancy hernias from the twins popped out again. When I rang my GP to ask about the progesterone difficulties, and ask if I could be made a priority for a Mirena coil, I was told to come off the HRT altogether, if I couldn’t wait. I was never going to come off my estrogen – I couldn’t live without it! Again, under private advice, I took Utrogestan vaginally instead of orally, which helped a bit – but the coil was my saviour. I actually cried when my coil appointment eventually came through!
I’ve now changed GP practice and it has been a totally different experience. I’m waiting for my DEXA scan to check my bone health (as I’m at higher risk of bone-weakening with POI), and I’m now feeling confident with my care, mainly because my private doctor informed my new GP – and they actually listened!”