Joanne on having a hysterectomy during Covid

At 33, Joanne had LLETZ treatment for cell changes. Her results from this treatment showed that the LLETZ had removed cervical cancer, so she would need further treatment. She shares her story and how recovering from her surgery has been during the pandemic.

My smear test was due in April 2020 but I didn’t go until September because of Covid. At my GP practice, the nurse only comes once a week and so smear test appointments just weren’t available. When I was finally able to book, I was really wary of going into the practice. Should I be going in? Should I try to stay away? It’s a lockdown, should I even be going out? 

"Going to colposcopy during the pandemic was a weird experience"

After my test, I was told I’d get my results in about 3 weeks. When I did, I got a letter telling me that I needed to be seen by the end of that week at colposcopy. It said that I had HPV. I wasn’t very happy about that, my first thought was that it’s an STI. 

Going to colposcopy during the pandemic was a weird experience as I had to go on my own. I also didn’t really know what I was going for. I thought I was just going to talk about my results, but the doctors started telling me what was going to happen, and asked me to get onto the bed. I must have looked taken aback as the doctor asked me if I’d known that I needed treatment, and was really shocked to hear that I hadn’t had a leaflet sent out with my results letter to tell me more.

They told me that the LLETZ treatment was to remove some cell changes I had. I was pretty shocked, but I was really comforted by the nurse who held my hand and kept me calm throughout, talking me through absolutely everything. 

"They told me that my best option was to have a hysterectomy"

Five days later I was called in to see a consultant. This was really scary as I wasn’t sure why I needed to come in. At this appointment, I was told that they had removed a tiny amount of cancer in the LLETZ treatment. The cancer was the size of a fingernail. They also said I still had some cell changes in my cervix in the margins which were harder to get to, which were CIN3. Because my cervix was really short, they couldn’t get to it to remove it. 

I took my husband to this appointment and I’m really glad I did, as he was asking lots of questions I hadn’t considered! They told me that my best option was to have a hysterectomy. This shocked me. I’m only 33 and still wanted another child. However I had to think about the two babies I had. I had to be there for them and get this out my body. I had to wait for six weeks for everything to heal from the LLETZ, then the hysterectomy was scheduled. Due to COVID I had to go straight into isolation when I got the date. 

The operation was a really strange experience, having to wear a mask and there being so few people on the ward which had plastic dividers between beds. They did the operation via keyhole surgery and I was out of hospital really quickly as due to Covid, they only wanted me to spend one night there. I wasn’t really given any literature to take away, or had anyone talk to me about the recovery and aftercare, so I relied on Facebook groups and peer support for this. 

"It really has been a rollercoaster of emotions"

The recovery was difficult, not being able to pick my kids up or play with them, plus the fatigue really got me. I think if Covid hadn’t been going on, I could have eased myself back in more, by popping out to do bits and bobs, and exercising more. I had to go from staying at home all day straight back into work in a school, on a phased return after 12 weeks off, which has been hard (even though work are really supportive).

I would say that the toughest and most worrying part was waiting for my results after the operation and wondering whether I would need any more treatment. It really has been a rollercoaster of emotions and I could not understand why all this was happening to me. I was already having counselling because I had been stuck at home with a 5-year old and a newborn baby during lockdown so, as someone who suffers with anxiety, this year had already been extremely tough. 

My counsellor helps me to talk things through logically which helps me feel less anxious. “What are you worried about? Can you do anything about that? If not, you just have to wait”. When I could feel my thoughts running away from me, I would write it down, and then instead of my thoughts spiralling, I would dedicate 30 minutes of my evening to thinking about it instead. This stopped me from thinking about it all day every day.

"I have honestly never felt so loved"

I’ve found peer support one of the most helpful things. I’m part of lots of Facebook groups – some for mums, for people who have had hysterectomies, and thankfully someone in a group pointed me towards Jo’s. Jo’s enabled me to find answers and to understand terminology that I wasn’t familiar with. It’s hard not knowing what was going to happen or what the particular procedures were, but Jo’s had all that information and gave me comfort. I would advise people to join groups and speak to others who can understand. Although you have the love and support off your friends and family it is hard for them to understand what you are actually going through. With Jo’s they get it. They understand and can support you through it all. 

I posted about my experience on Facebook to help raise awareness and to encourage others to book in for their smear test, to help prevent others from going through this. In fact, another person that booked in for their smear test because of what I went through had cervical cancer picked up. The love and support I’ve had off people has left me close to tears and I have honestly never felt so loved. On January 8th I got the call from my consultant who told me I was clear! The best news of 2021. I can’t wait for the day that I can go out and celebrate this with my friends.

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