Lavinia’s Story Part I

Christmas has always been a magical time for me and my family. With three grown-up children and two granddaughters all descending on us for the holiday season in 2014, I was looking forward to cosy evenings in front of the fire, music, country walks and plenty of festive celebrations. Little did I know that I was about to face one of the most challenging times of my life. I was 62 at the time, post-menopausal, happily married for 36 years to my husband and father of our children and working for the YES Organic Intimacy Company in a part-time role that I really enjoyed. My job involved liaising with medical professionals and raising awareness of the importance of vaginal and vulval health and sexual wellbeing. These topics were not often openly discussed and there was, and to a certain extent still is, a taboo surrounding intimate symptoms such as vaginal dryness, painful intercourse, lack of libido and bladder problems. In 2003, The YES YES Company had developed a range of certified organic intimacy products, including lubricants and vaginal moisturisers and in 2014 two YES products were listed on the Drug Tarif and available on NHS Prescription. I felt hugely privileged to be able to attend many medical conferences to introduce our products to GPs, Gynaecologists, Menopause and Cancer specialists. In order to learn more about the conditions affecting intimate health, I made it my mission to sit in on as many lectures as I could. This helped me to understand more about my own gynaecological wellbeing, but also to learn about the latest research and treatments available. I was able to listen to some of the top specialists from around the world and although my lack of academic qualifications meant that many of the charts and data were mind boggling, I still found the lectures fascinating and enlightening. Little did I know at the time how important this education would be in terms of my own health outcomes.

At the beginning of December 2014, I noticed some spotting – nothing substantial but enough to make me think that this was not normal for me. I also remembered from attending conferences on menopause and cancer that any post-menopausal bleeding (PMB) is a classic ‘Red Flag’ symptom and should be reported to your GP immediately. There may be other benign reasons for post-menopausal spotting or bleeding such as polyps or fibroids, but it is always essential to see your GP to have it checked out. It is one of the early symptoms of endometrial or womb cancer. The standard procedure for this symptom is a referral to a gynaecologist and a vaginal scan. This is not an invasive procedure but allows the specialist to look at the lining of the womb (endometrium) to see if it has increased in thickness, or if there is anything that suggests a tumour.  Following the scan, a hysteroscopy (fibre optic camera test) is then required to take a small biopsy of the womb. The result of this biopsy is the moment for the diagnosis. Communication from health care professionals is not always clear and concise, and I know of women who have attended the follow-up appointment on their own, only to be told they have womb cancer. It is really important to have someone close to you at this appointment, as the news can be a shock. I had my husband with me when I was told that I had a Grade 2, Stage 1a tumour and that even though womb cancer is the most common of the gynaecological cancers, if caught at an early stage, it is very treatable and has a positive prognosis. Back home, on Christmas Eve, the moment arrived to share the news with the family. We gathered together and their bright smiling faces changed when I mentioned the word cancer. I have always been the sort of person who finds it hard to keep a secret, and so I felt it important to be open, especially in order to raise awareness of the signs and symptoms amongst female friends and family. Without exception, every friend I told about the diagnosis, asked me about the symptoms and how I knew to go to the GP. This made me realise how lucky I was to be working in the area of women’s health with access to information that was to be key to my early diagnosis. It seems that there is very little education about the five gynaecological cancers, so it is really important that we talk openly and ensure that every woman is aware of changes that may be an indication of something that needs investigating. The most challenging aspect of the diagnosis in the early days is the wait for the results after each procedure. With my journey, after the hysteroscopy, an MRI was performed to see if the cancer had spread through the lining of the womb, into the lymph nodes or further afield. In my case, I was very lucky, and it appeared that the cancer was contained so finally a date was set for a radical laparoscopic (key hole) hysterectomy during which my womb, ovaries, fallopian tubes and cervix were all removed. One or two lymph nodes were also removed for examination. The analysis of the tumour and the lymph nodes would then determine the treatment I needed following surgery.