Premature Ovarian Insufficiency: My Story
I’ve decided to share a little more about the journey I’ve been on – as I know how lonely Premature Ovarian Insufficiency (POI) and fertility struggles can be. Although it feels scary to share on here, if my story helps one person, it will be worth it.
So before I get started, here’s a little information about POI…
POI is typically used to mean menopause that comes well before the average age of normal menopause — when you’re still in your teens, 20s, 30s, or early 40s. Simply put, it means that the ovaries aren’t working properly. They stop producing eggs years, and in some cases even decades, before they should. In addition, the ovaries are unable to produce the hormones estrogen and progesterone, which have important roles in women’s health and well-being. POI is different to menopause that occurs at around the average age (52 years). Not only does it occur at a very young age, but the ovaries often don’t completely fail. This means that ovarian function can fluctuate over time, occasionally resulting in a period, ovulation or even pregnancy, several years after diagnosis. Because of this intermittent temporary return of ovarian function, approximately 5-10% of women with POI may still conceive. Approximately one in every 100 women under the age of 40, one in 1,000 women under 30 and one in 10,000 under 20 experience POI. A spontaneous (natural) early menopause affects approximately 5% of the population before the age of 45.
Daisy Network
I started my period age 9 – what felt like years and years before any of my friends started theirs. I remember starting secondary school and a few of my friends said that they couldn’t wait to start their period – I thought why on earth anyone would want that, it’s bloody awful!!! I really suffered with excruciating period pains and heavy bleeding. It felt like so much to deal with when at school. I’d always get my period during exams too….I’d be in so much pain and I’d find it so hard to concentrate and focus.
A few years later (I can’t remember exactly when….but I think I was around 16) my GP put me on the pill to help manage the painful and heavy bleeding. Looking back now, I wish they had done some tests and looked into why my bleeding was so bad, instead of putting me on the pill to manage it without any investigation to the cause.
Fast forward 7 years, age 23 I decided to come off the pill and my periods returned, for a little while.
I wasn’t tracking my cycle at this point, in fact I didn’t even realise this was a thing – or of the importance of doing so (your cycle can be a great indicator of your general health as sometimes even the slightest change can be a sign that something is out of balance)! Because of this, I didn’t notice my periods stopping until many months later.
I was experiencing very low mood and what I thought were panic attacks (I have since realised these were hot flushes – they’re pretty intense and scary when you have no idea what’s going on!). I had a lot going on in my life at that point with a string of family losses and my GP put it my low mood and lack of periods down to stress and depression. I was prescribed antidepressants, however these didn’t help as they were not treating the route cause of what was really going on.
I decided to go travelling and before I left I went to the doctor and and they finally did some blood tests because my periods still hadn’t returned. My GP tested my LH and FSH. Unfortunately she took the incorrect decision to not tell me my results as it was just before Christmas and she knew I was going travelling, so she told me to come back for further tests when I came back home.
Whilst towards the end of my travels my periods came back!! I thought everything was fine so I didn’t go back for further tests. They stayed for a while but then became really irregular again with long gaps between each one and extremely heavy and painful bleeding. This coincided with my low mood returning and intense panic attacks (hot flushes) and lots of other symptoms. I kept on saying to everyone that I felt like I was going through the menopause, either that or I was losing my mind.
I decided to go back on the pill to help ease the heavy bleeding and I booked a doctors app with a new GP. They asked why I wanted to go on the pill and if anyone had explained my previous LH and FSH results to me. I said that they hadn’t.
She then leaned over and said ‘I’m so sorry, your test results indicate that you’ve gone through the menopause’. (my results at the time were FSH 106, LH 62).
MENOPAUSE?! I’M ONLY 26!!!
It was a massive shock, but it also felt as if everything suddenly made sense. I wasn’t losing my mind after all…..there was finally an explanation to how I was feeling.
After my diagnosis I dived head first into finding out as much as I could about my chances of having a baby. I wasn’t eligible for IVF to freeze my eggs as I was single and because it was a natural menopause (not forced through medical treatment).
I still felt positive that it would still have my own family, somehow. I didn’t get any support to be honest when looking into my fertility options. I had to go private and I booked an AMH test (this indicates ovarian reserve) and was awaiting the results.
The night before I suddenly thought….what if it’s not good news? So I text my friend to ask her to come with me. As we waited outside I showed her my little AMH graph and said I thought maybe I’d be in the green/amber zone – I was very optimistic!!
We walked in and sat down. The fertility doctor told me that my AMH was 0.001. I was looking on the graph to find it and then he pointed to the bottom line of the graph….and then I realised. My friend started crying and we had to get her some tissues!! I just felt numb, I didn’t really feel anything at that point. He said I’d have a less than 1% chance of ever conceiving naturally and that I wasn’t eligible for IVF as they wouldn’t be able to harvest enough eggs.
A donor egg or adoption were my only options to become a mother.
The year that followed was hard. I don’t know if it really sunk in to be honest. It was such a strange feeling that my own body wasn’t working how it should be. I felt like I had no control. All this along side the POI symptoms (low mood, hot flushes, brain fog, memory loss, aching joints, exhaustion etc) made everything feel more intense on some days.
Eventually I got myself to a good-ish place through yoga and mindfulness. I decided that it was all going to be okay. I’d always wanted to adopt so I focused on this instead.
I went travelling again….and guess what happens! My period comes back!! I’m sure it was because I was super relaxed when I was there!
8 weeks later after we were back home I found out that I was pregnant!!! I couldn’t believe it!!! My gynaecologist said it was a miracle baby, he’s now 3 years old and I can’t believe how blessed I am.
I breastfed him for around 13 months and once I stopped, that’s when all my POI symptoms came back. The hot flushes were more intense than ever and it coincided with me also returning back to work full time.
Since then my periods stopped and I went on HRT to help me to manage the symptoms and to also help protect my bone and brain health due to my lack of oestrogen.
I was desperate to have another baby and I really struggled mentally and emotionally with my lack of periods. I decided to go on the pill again for three months and then come off it to see if my periods would return. I got pregnant straight away!! I couldn’t believe it!
Unfortunately, at around 7 weeks I went to the toilet to find that I was bleeding. I broke down and instantly knew what was happening. This happened during C-19 lockdown, which meant that I had to attend the hospital alone to have a scan. I still had a little hope that everything would be okay. I will never forget how it felt to to lay on the table, all by myself, with nobody there to comfort me when I saw my empty womb up on the screen. I had to go back to the hospital by myself a few more times as they needed to another scan and blood tests to check that it wasn’t ectopic.
I have to say that I don’t think anyone can really understand a miscarriage until they go through it themselves. All the hope and dreams suddenly taken away. I think what shocked me the most was the physical side of the loss. The reminder every time I went to the loo to see all of the blood, the increasingly heavy bleeding and the painful contractions were horrendous.
After the miscarriage my periods didn’t return and I really struggled emotionally with this as it felt like a double loss. I went on HRT again to help manage all of the symptoms.
Just over a year later I fell pregnant!! I’m currently 24 weeks as I write this!!! I honestly just can’t believe it.
If all goes well and i’m lucky enough to breastfeed again, I know my symptoms will return but at least this time round I will know the warning signs from experience and can get help as soon as possible to manage them.
Thank you so much for taking the time to read my story.
If you have recently been diagnosed with POI I would highly recommend joining the Daisy Network.
