How a Missed Period Turned into Menopause Aged 23 by Sophie

When you are 22 years old and your period is late, there’s only one thing your mind (and the internet searches) go to.  I had finished University the year previous and had worked at my current company for a year.  I lived at home with my parents, and my long term boyfriend lived in a completely different city to me - there was no way that I was ready to have a baby.

Instead of dealing with the situation and doing a test to find out either way, I buried my head in the sand. The following month when my period arrived, I had no words for the relief I felt. I put the missed period down to stress, and thought that would be the end of it.

Until my next period didn’t arrive. This went on for around 6 months - one month having a period, the next month not having one. I was too embarrassed to talk to anyone about the missing periods, I just kept pretending everything was fine, and I went on like this until January 2020. Looking back, I wish I had spoken up sooner.

At a regular check-up for my Crohn’s Disease (diagnosed in 2012, aged 14), I opened up to my IBD nurse specialist about some unexplained weight I had gained, and the missing periods. She referred me for some further testing, suggesting I may have Polycystic Ovary Syndrome, or simple cysts on my ovaries. I had an ultrasound at my local hospital, and 3 days later, my GP called to ask me to come into the surgery to talk about my scan results. It was at this appointment he told me that I had a 12cm complex cyst on my right ovary - and that they couldn’t rule out cancer at that point.

I was devastated. I was just a few weeks away from turning 23, being told that I could possibly have cancer - I didn’t know what to do with myself, all I could do was cry. Further testing showed the specialists that I had a 12cm Borderline Tumour- they explained this to me as a precancerous tumour (and a different doctor later on said that the tumour was at stage 1 cancer). A borderline tumour differs in everyone who has them - it can take years to become malignant, but also can take no time at all - and because of my age, they didn’t want to take any risks. I had surgery to remove the tumour, my right ovary & fallopian tube on the 17th March 2020 - 5 days later, the UK was put into the first Covid-19 lockdown.

I recovered at home with my brilliant, supportive family around me, but the COVID-19 lockdown meant that I had to attend any follow-up appointments on my own. It was a lonely situation to be in. After 6 weeks, I ‘returned’ to work - thankfully, working from home! I was ready to put the whole ordeal behind me - but my body had other plans.

10 weeks after my operation, I had an MRI scan to look at some fistulas - which I get often due to my Crohn’s Disease. When the results came back, I was glad to see my fistulas hadn’t worsened - but was horrified to see that I had been referred back to Women’s Health at my local hospital again…my left ovary looked larger than it should have been. I was desperately hanging on to any other potential reasons that it could be enlarged - I had unfortunately had quite a horrendous experience of recovering in hospital after my oophorectomy due to being put on morphine after the surgery (I don’t tolerate it very well) - and so in my mind I was beyond terrified of having to go through that all again. My worst fears were confirmed after a second round of scans - there was a 6cm mass on my second ovary. The specialists were concerned it was a borderline tumour like the first, but as it was much smaller they decided to monitor me by scanning me every few months. They were reluctant to operate straight away, as it would mean removing my left ovary - and this would cause my body to enter the menopause at 23. The doctors were also very concerned with preserving my fertility, if they could. So, we waited. The main specialist I saw hoped it would turn out to be a simple cyst that was just taking a little longer to break down than normal - but, it seems luck was not on my side.

I was scanned every 3 months, and after the 3rd round of scans in January 2021, the head specialist broke the news that the mass had grown only ever so slightly - but enough so that they could see it was definitely a borderline tumour like the last, and that they needed to operate. I was at that appointment on my own, again due to the Covid-19 lockdown - and had to take this in all by myself.

Once again, I didn’t know what to do with myself, and just cried. The specialist discussed my options with me - the removal of my left ovary & tube only - or a full hysterectomy. I spent a lot of time discussing my options with my loved ones, and I spoke with various fertility specialists too. My fertility options were very slim - they couldn’t save any of my eggs from the ovary because of the tumour, and so my chances of ever being a biological mother were gone. The fertility specialist explained that I could keep my womb, and in the future go through IVF and egg donation - that way I could carry and give birth to a baby.

I opted for a full hysterectomy. I’m sure some people reading this will question my decision, and wonder why I didn’t choose to keep my womb and give myself a chance of being pregnant in the future - ultimately, I had to put myself first. I couldn’t bear the thought of going through a second operation, and then in a few months’ time find out that the tumour has come back in my womb or cervix- and face more surgery. I also have a narrowing of my bowel due to the Crohn’s Disease, which likely means that in the future I will have more surgeries to help - which is more than enough to contend with.

After the surgery, my body went into a surgically induced menopause. I was prescribed estrogen-only HRT patches, and was sent on my way! I felt quite alone in my new journey - I didn’t (and still don’t) know if I was receiving the right amount of estrogen via the patches, and I didn’t have anyone my own age to turn to, I have had to ask advice from my mum’s friends who are going through the menopause too.

Just before Christmas, the company where I work launched a menopause awareness month campaign, and as part of this they created a support group. The group meets monthly, and we have a group chat too - I've found masses of support and advice from the brilliant women in this group. I'm so grateful for the wellbeing team at work for putting the group together, I would be lost without it! 

My main takeaway from this whole experience is to never ignore your body. If something isn’t feeling quite right, seek medical advice as soon as you can - don’t bury your head in the sand like I did.