Beating bowel cancer together

The impact on fertility, menopause and sex after bowel cancer treatment

Sima Davarian, 38 from Plymouth, was diagnosed with stage 3 bowel cancer in 2015. Although she has now finished treatment, she shares with us the impact of her experience on her reproductive health as well as sex, relationships and wellbeing.

What impact does treatment have on your sex life, fertility and relationships as a bowel cancer patient? As well as arguably being the most awkward cancer to discuss (poo, bums, colons and all that) it also encompasses other very personal and delicate aspects of your personal life.

It’s the last thing on your mind when you receive a bowel cancer diagnosis and begin your treatment. However, many of the common methods of treating bowel cancer - radiotherapy, surgery and chemotherapy - will all have an impact on your sex life and your fertility status. Whilst I am always loathe to criticise the care I received, I think this area needs greater discussion and support, particularly because data shows that incidence of bowel cancer have increased among the under 50s - although the mortality rate has not changed significantly (as reported in GUT journal, 2019). This suggests that more people under 50 are being treated successfully - great news - but might be experiencing difficult decisions around fertility preservation, changes in body image and self-esteem and experiencing early menopause. There can also be drastic changes to libido and sex life as the result of life-saving treatment.

Clearly we have finite resources to tackle the disease but those of us who are lucky to be treated and to be cancer free, and frankly those who are living with cancer, have the right to receive timely advice and support to help us negotiate huge changes to our bodies and minds.

Radiotherapy, particularly pelvic radiotherapy (which is more likely to be used in treating bowel cancer), has a huge impact on both men and women. Writing from my own experience I know that the decision to have pelvic radiotherapy wasn’t much of a choice. My oncologist focused on ‘hot flushes’ as a headline menopausal symptom that could be cured with hormone replacement therapy (HRT). I had to initiate the questions around this because my perception of HRT was negative. Needless to say I didn’t experience hot flushes and my lack of knowledge about other symptoms hindered my understanding about what was happening to my body.

For younger women, the menopause, because of cancer treatment, inverts everything you expect about your chronological age and your menstrual cycle. I wish that I had been better informed about the potential symptoms (and I think this is a problem with women of a more typical age at which to experience menopause too) because at times I actually thought I was going crazy. Mentally I was foggy and had volatile mood changes. I described my brain as feeling like a ‘plate of wires’ to a psychotherapist who explained that this confusion and lack of connected thinking was due to the menopause. For two calendar years I experienced a miserable range of symptoms that I later learned were all associated with the menopause. Had I known this at the start, I would have felt far less bewildered (but no less sad or angry about my loss of fecundity at 34). As time has passed, even more confusingly my body seems to be trying to repair itself. It’s not always an unequivocal menopause that is experienced but a fluctuation of hormones.

Despite the care I received during cancer treatment, there seemed to be no-one directly on hand to advise or guide me through these side effects. A range of advice and treatment, both on the NHS and eventually privately, have helped me to piece things together. But this has taken several years after my cancer treatment ended. That is a long time to wonder what the hell is happening to you. And also expensive if services aren’t available via the NHS.

The understandable change to libido as the result of the trauma and treatment for cancer takes time to overcome and a regaining of confidence lost. The shock of not knowing your body, of feeling betrayed by it, is only compounded by how cancer treatment invades every aspect of your life that you thought you once knew. It sounds dramatic but I firmly believe that the trauma of diagnosis and treatment leaves deep, deep scars that we don’t fully understand and maybe patients aren’t supported enough holistically. There are sources of support out there but what might be available to you could depend on what services are provided in your geographical area, meaning variation is possible.

Fertility preservation is something we must ensure that younger patients receive timely and good quality advice about. There are many aspects to this - your stage of diagnosis and how much time before you need to start treatment; whether you can even preserve anything at all. But again, these crucial issues around younger patients’ bodies (and I know I’ve focused on women mostly, but much of this applies to male patients too) are not always factors for an older patient.

We must, as a community, ensure that advice and support is tailored to these patients. It always feels churlish to complain about something when you have survived cancer but hopefully there will be more of us and we need to make sure that we lead full and effective lives, unhindered by unpleasant long term effects which are very treatable - with the right support and guidance.

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