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Giving Womb Cancer a Voice – Karen’s Story

Karen was diagnosed with stage 1, grade 2 womb cancer in February 2021, aged 51. Despite having irregular periods due to polycystic ovary syndrome Karen knew a long, heavy period was not normal for her and sought GP advice. If something doesn’t feel ‘right’ to you it’s important to get it checked.

It all started in December 2020. I had never had regular periods as I had polycystic ovary syndrome, so when I started a heavy period mid-December, I didn’t think that much of it, apart from thinking it was about time these periods stopped altogether at my age!

Anyhow, I was still having a heavy period in early January. Again, it was not unusual for a period to last weeks, but the colour was bright red instead of darker red. I also had a painful left side, which was out of the ordinary, as I had never really experienced period pains.

By mid-January I had had enough: I was feeling drained, tired and I was using so many sanitary products I felt I should have shares in them. My initial consultation with my GP, as it was during lockdown, was by phone. I was asked to go down for a face-to-face appointment the same day as she wanted to examine me.

When the GP examined me, she said she felt something on my cervix, which was probably a benign polyp, and was going to refer me to the hospital.  I wasn’t worried and waited for my appointment, which came through within days.

The consultant who examined me found the polyp and removed it there and then and sent it off to the lab. Whilst she was examining me, she decided that due to my medical history, plus my weight, she would do an endometrial biopsy. I won’t lie it was blooming painful but that few minutes of pain was worth it.  Me being me, I went away thinking that was it: I was sorted, and I carried on with my life. I was shocked to receive a letter 10 days later asking me to go back for the results of the biopsy. 

The consultant was surprised I had come on my own but, due to covid, I had been told to go alone. I still didn’t twig there was a real problem until she handed me a tissue and told me I had womb cancer! When I heard the word cancer, my world stopped momentarily. The consultant was concerned how I was going to get home: could my husband come and fetch me and was I ok to drive. I was thinking that I needed to get out of there and home to my husband & puppy. The worst part of that day was not being told I had cancer but having to tell my husband and my elderly parents I had cancer. I felt I had let them down in some way. 

The next few days passed in a blur. I was sent for an MRI scan to see how advanced the cancer was and luckily my husband was able to come with me to that appointment. The week I was going to see the surgeon for the MRI results I had to self-isolate and so received them over the phone. The relief my husband & I felt to hear it was stage 1, grade 2, very early-stage cancer was indescribable. Yes, it was still cancer, but it had been caught early.  It was explained to me that I would need a total hysterectomy with bilateral salpingo-oophorectomy (removal of the ovaries and fallopian tubes) and that it could be done by keyhole surgery.

The pre-op assessment was fine: I met some of the nurses who would be on the ward after the op and the consultant anaesthetist, who deemed me fit for surgery.  Due to my weight (I’m classed morbidly obese), I had to wait for a High Dependency Unit (HDU) bed to be available just in case anything went wrong during the operation.

Due to Covid-19 I had to isolate for 3 weeks beforehand and in early April, I went in for my op. I hadn’t seen the consultant surgeon face to face and I wasn’t sure what was going to happen but all the staff were friendly, caring and put me at ease from the moment I arrived. It all seemed a bit surreal if I’m honest. I met the anaesthetist, a lovely man, who was different to the person whom I’d seen before. I then met the surgeon, again a different surgeon to the one I had spoken to over the phone. I was asked if I wanted to know how they were going to do it and if I had any questions.  I didn’t have any questions, I told him he was the expert and that I trusted him.  My only real concern was being sick afterwards as I don’t react very well to anaesthesia, but he pumped me full of anti-sickness drugs, so I didn’t even feel sick.

As I was on the afternoon list, I was asked to wait in the waiting room, where I watched tv and did crochet, which was all very relaxing. When it was time to go in, I was walked to the operating table, settled down and the next thing I remember was them trying to wake me up to tell me I was going to the ward. I didn’t come around properly until 10pm that night. I was kept on oxygen all night as my levels were low but apart from that I had a good night’s sleep.

First thing in the morning my catheter was removed as I had been drinking all night & my bag was full. I had my breakfast and was allowed to go for a shower. I was so surprised by how well I felt. I wasn’t in pain and didn’t feel sick, just very tired. The consultant surgeon and the physiotherapist checked I was walking ok and could walk up and down the stairs – I’m a very fit fatty you know! I was allowed to go home with a bag of painkillers and anti-clotting injections. Who would have thought you could go home 24 hours after a major operation?

I took the 6 weeks off work as advised, even though I thought in my head I could go back to work after 2 weeks. An afternoon nap became the norm for me and going for short walks in the fresh air really helped with my recovery too. I went back to Pilates after 11 weeks post-op and my dog and I walk up to 30 miles a week, sometimes more depending on the weather.

At my first post-op clinic appointment, in late April, I was told they had got all the cancer in one go and that I didn’t need any radiotherapy or chemotherapy. My husband and I were so happy. I was one of the lucky ones. Yes, I had cancer, but knowing my body and doing something about it straight away helped to catch it early.  At my next clinic appointment in July, I was discharged but under strict instructions to ring if anything was wrong or any bleeding appeared.

Since I learnt about the cancer, I have lost 4 stone in weight and hope to lose more. I have never felt so well. Yes, I have had low moments and bouts of ‘what if’s’ but that is normal.  I don’t take my health for granted anymore and I listen to my body when something isn’t quite right.

Originally published Oct 2021
Updated Feb 2024