Leonie’s Journey
after experiencing an extreme amount of pain around her ovaries and abdomen, LEONIE booked an appointment with her gynaecologist. FOLLOWING A ROUTINE HYSTEROSCOPY AND BIOPSY, SHE WAS DIAGNOSED WITH severe complex atypical hyperplasia with focus of Grade 1 endometrioid adenocarcinomaI cancer.
In April 2024 I was diagnosed with womb (endometrial) cancer, aged 43, after months of trying for a baby. My husband Alex and I had been trying for a while, and had given ourselves until my 44th birthday in September 2024 as the cut off. Throughout this period of trying to conceive, I’d experienced an extreme amount of pain - around my ovaries and lower down, in what felt like my abdomen. I’d assumed the pain was due to the miscarriages I’d had. The last one had been particularly unpleasant and incredibly painful. In February 2024 and with the clock ticking, I decided to book an appointment with my gynaecologist to see if she could tell me anything about the discomfort I was experiencing.
An internal ultrasound showed possible endometriosis (something I knew a little bit about as I’d had some removed previously, along with a grapefruit-sized dermoid cyst as part of the same operation, back in 2021). The February ultrasound also revealed a polyp. The two issues would be enough to disrupt a pregnancy. I was relieved, as it meant that a routine hysteroscopy and biopsy could clear my womb - leaving me free to continue to try to get pregnant. 2024 would be the summer of love! In April, I went in for the procedure. The consultants at the Portland Hospital for Women & Children were wonderful. When I came round in the recovery ward, they were positive about the outcome. The consultant had indeed found some endometriosis, but interestingly, also clusters of polyps around my cervix. I went home feeling elated and ready to heal and get back to our baby journey. However, four days later, the consultant rang with the devastating news. I was diagnosed with severe complex atypical hyperplasia with focus of Grade 1 endometrioid adenocarcinomaI cancer. As a fit person, rowing and running several times a week and with a meat and dairy free diet since 2000, the pathology results were difficult even for the consultant to conceive. I did not fit the typical profile. It was a blow. You might think me totally mad but, after months of failed pregnancies, I found it much harder to come to terms with the notion that we wouldn’t be able to try for a baby over the course of the summer as planned. The cancer diagnosis was secondary to that. I cried for days. Being a little older, I knew time was running out. I felt panicked and sick. But I also knew I needed to get on with whatever was next.
An MRI and CT of my pelvis showed the cancer had not spread beyond the womb lining, nor had it moved to the lymph nodes. All reassuring and obviously great news. I was switched from my gynaecologist to an endometrial cancer specialist who quickly recommended the safest and most reliable approach would be to undergo an immediate hysterectomy. After much discussion around the alternative option, I persuaded him to let me try the oral medication that would get to work on lowering my oestrogen levels, whilst simultaneously fighting to recede the cancer. With so few of his patients of a premenopausal age, I was essentially a guinea pig. But I didn’t care. While I wasn’t about to play fast and loose with my health (had the consultant insisted, I would have opted for the hysterectomy) trying to save my womb, temporarily at least, would mean we had some hope left for a baby. I’ve stuck with the oral treatment since that first hysteroscopy in April. I go back to the hospital every three months for the same procedure to track progress and monitor the effectiveness of the drug. I also had a Mirena coil fitted in August - to zap the cancer from the inside. For the first time this year, a hysteroscopy in October showed the cancer is finally showing signs of abating. In February I will go back for yet another procedure. This time I am hopeful the medication will have cleared my womb as much as is possible, and that the pathology results will be positive.
The impact on my mental health throughout - from the miscarriages to the diagnosis - has proved extremely difficult to manage. I packed up work for a while as I felt under so much pressure day to day. I’m coping better now, but it’s a regular challenge to stay positive and look ahead. I’ve been really lucky as the cancer was picked up early, albeit through the complete fluke of undergoing investigations for something else. Who knows where I would be now, had the biopsy not detected the cancer? It’s wild and crazy-making to think about.
While I am hopeful that the treatment will work and that we still have enough time left to try again for a baby in the early part of 2025, I am anxious and frightened. It’s really important to me that I highlight my story. While I have evaded any serious treatment and my story may not seem serious, the possibility of having a family is now in jeopardy, and the timing of the cancer diagnosis feels particularly cruel. And I know that hysterectomy is waiting for me. I worry for other young women who may find themselves in a similar situation because of a lack of knowledge. My mum died very young when I was still a teenager, so I’ve always been vigilant with breast checks, with smears and generally keeping an eye out for anything suspicious, up top and down below. I had no idea that endometriosis was something to be concerned about as a younger person. I knew about the importance of cervical smears, but I hadn’t understood the possible impact of endometriosis on fertility. If I’d known more, if the information was widely available ten years ago, I would have frozen my eggs as a precaution. I think for me, awareness and knowledge is the key. I wish I knew then what I know now.
Womb (endometrial) cancer is often casually described as “old lady cancer”, which is reductive and crude, but this tag shows how it is still considered to be less of a concern for women who are premenopausal. Yet the stats show numbers of women being diagnosed with womb and uterine cancers are on the rise. It’s currently the most common gynaecological cancer in the UK. Of course, with no national screening test available, it’s incredibly difficult for women to get a diagnosis for this particular type of cancer. Like other gynae cancers, it’s so hard to know what “normal bleeding” around our periods looks like, or what “normal pain” feels like. We all experience weird periods from time to time - the truth is, there is no such thing as a normal period!
I would advise any woman experiencing any of the known symptoms (unusual bleeding or bleeding between periods, heavier periods than what is typical for you, abdominal pain) to see their GP and discuss a referral for a further examination if required.
For anyone who has lived through the awfulness of a mum, sister, auntie or friend dying because they were diagnosed too late, we know how vital it is to check and be checked. We’re in a much better place than even a few years ago, where we now have the extraordinary ability through social media and organisations like Lady Garden Foundation to raise awareness, share stories with strangers, and look out for each other while together advocating for better gynaecological care.