I had never missed a cervical screening appointment. I had never had  abnormal cells picked up until November 2023. However, I had been HPV positive since 2021 so was attending annual cervical screening.  

I started experiencing bleeding after sex and bleeding in between periods in 2022. I visited my GP as soon as it became apparent the bleeding was not temporary. They referred me to my local women’s hospital to see a gynaecologist and I had an appointment booked for May 2022. Unfortunately, the appointment was cancelled by the hospital due to staff sickness and I didn’t get another appointment until September 2022. I was assessed by my consultant and reassured that my bleeding was being caused by a cervical ectropion (this is sometimes called cervical erosion). It is completely harmless and not linked to cervical cancer, it is when the cells on the inside of the cervix start to grow on the outside of the cervix). The consultant stated that as my cervical screening results were normal, she wasn’t concerned. However, I returned six months later with worsening bleeding. 

The consultant referred me for an ultrasound and for a coloposcopy where she said I’d have biopsies taken. The colposcopist said that my cervix looked normal so didn’t need to take any biopsies. She confirmed I had a large ectropion and that was the reason I was bleeding. The ultrasound was also clear.  

In November 2023, I attended my annual cervical screening appointment. I bled a moderate amount on this occasion when the swab was taken, which was unusual for me. I then had my screening results through the post, along with an appointment for a colposcopy for 2nd Dec 2023. For the first time in my life, my cervical screening results stated, “high-grade CGIN, HPV positive.” I was terrified as I knew it would be cancer, knowing that I had been symptomatic for over a year! I attended my colposcopy on 2 Dec 2023 where they took three biopsies. I had to wait until 21 December to be told that I had a rare form of adenocarcinoma – invasive stratified mucin-producing carcinoma (i-SMILE). This is a rare form of CGIN that is inside the cervical canal (the endocervix), which makes it harder to pick up cell changes in cervical screening. I was in shock. I never missed my cervical screening and had never had cell changes found until the year I had my diagnosis.  

My initial thought was for the surgeon to just cut it out and to give me a hysterectomy.  I was told that I needed to have an MRI scan and a LLETZ procedure to investigate further and decide on the best treatment. The LLETZ procedure was done under a general anaesthetic at my request, and I was told it went well. My copper coil was replaced too.  

The histology results confirmed the cancer stage as at least a 1B2.  I was told I’d need surgery to remove my womb, cervix, ovaries and fallopian tubes and nearby lymph nodes and 2-3 cm of the vagina and the tissues around the cervix .Thankfully the MRI and PET scans confirmed that the cancer remained within the cervix so confirmed my staging as 1B2. I finally had my surgery in Feb 2024. My histology results were reassuring and no evidence of disease was found in the tissue and lymph nodes that were removed.   

I had hoped that as the disease was contained within the cervix, I wouldn’t need any further intervention. However, because of the aggressive nature of the rare sub-type and one of the surgical margins was only 2.5mm rather than 5mm, it was decided that chemo and radiotherapy would give me the best possible outcome.  

I had already had major surgery that carries a risk of developing lymphodema and with adjuvant chemo and radiotherapy, my risk of developing lymphodema increased again. I was really distressed at the thought of this happening to me, but I agreed to have the additional treatment which was carried out nine weeks post op and finished in May 2024. I continued to elevate my legs when sitting down as advised as part of an effort to prevent developing lymphodema, as well as staying hydrated and doing daily exercise. 

In August 2024, we went on a family holiday to celebrate me completing my cancer treatment. The weather was really warm and sunny and we did lots of walking to the beach then lots of sitting on the beach. This is when I realised that my right thigh was slightly bigger than my left. I made every effort to continue with my routine of exercise, hydration and leg elevation.  

I had a follow up with my gynaecologist later in August and told him about my thigh and asked about being referred to the lymphodema clinic. His response was he didn’t think it was that noticeable, and “they would laugh at us” if we did a referral for such a small difference in size.  I felt reassured and continued on with my routine to help prevent further swelling.  

However, in November 2024, I started to notice that my right thigh would start feeling tight if standing up for a period of time. I had another gynaecology follow up that month and I insisted on a lymphodema referral this time as I knew it was getting worse, although remained confined to my thigh. I finally got an appointment through after a three month wait. I was glad to be seen and be measured for compression hosiery, although I had become very distressed in the meantime as I was annoyed at myself for not pushing for a referral in August 2024 and being dismissed my surgeon. 

I started obsessing about lymphodema surgery and that would be the solution to my problems. However, after paying for a private ICG scan, this showed that my lymphatic flow to my legs was relatively normal so bypass surgery wouldn’t be an option as there isn’t anything to fix. I was told that the best treatment option I have is good compression and to continue with self-management.  

I felt really upset that I’m now stuck with compression for life, and it is a constant reminder of what I’ve been through. I’ve had counselling to try and come to terms with it, and I feel so much better now that I’ve changed my mind set into thinking how strong I am. My body has been through so much and it will continue to support me as long as I look after it. I don’t like the compression, but I have a good lymphodema nurse who is working with me to find a suitable option that I can tolerate and stays in position. Cancer and treatment side effects will not control who I am and I will continue to do everything I want to do without it controlling me.  

I hope that I can reach out to other women and tell them not to give up and to advocate for themselves whenever possible. Trust your own body, remain aware of possible side effects following cancer treatment without becoming obsessive and anxious about them. Don’t be afraid to live.