Lynne Essex was diagnosed with endometrial cancer when she was 54. It has been three years since her treatment, but she still has not had sex.
“No-one told me anything about what would happen, how sensitive the area would be where I had the radiation,” she said.
“Because it was endometrial, the vaginal area is all very sensitive, and that’s what scares me about having sexual relations.
“I haven’t been in a partnership for about seven years.”
Ms Essex had a hysterectomy, but a few months later the radiation that was used to shrink another tumour tore a hole in her bowel, leaving her with an ileostomy bag.
Despite her terminal prognosis, she is determined to embrace life and dating opportunities.
But she said that journey had been made more difficult because she was not informed by doctors about the impact of cancer treatment on her sex life, and instead had to resort to her own research, and support service Bloomhill Cancer Care.
While Ms Essex has had “a couple of chances” at having an intimate experience over the past few years, she has been too scared.
“The fear has been there to actually go all the way,” she said.
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“My bones have gone like osteoporosis now and I’ve had fractures in my pelvis, pubic bone and sacrum because of it.
“I think my situation [wearing an ileostomy bag] was I just wanted to hide it.”
Therapist calls for more sex talk
Ms Essex’s story is not surprising to sexologist Jocelyn Klug.
“I’m always hearing of patients who have not been informed of the consequences of treatment on their sexuality,” she said.
“For many doctors there’s an awkwardness. They don’t want to be seen to be prying and I think this is generally about their respect for the patients.”
Ms Klug urged patients to speak up to their partner and doctor.
“Most couples struggle to talk openly about sex and so when we don’t communicate, we’re left making assumptions,” she said.
“Find the courage to bring up this topic [to your doctor] and ask ‘What is the impact on my sex life?'”
She said far too many couples ended up avoiding sex and intimacy post-treatment.
“Sadly for a lot of people, because of sexual dysfunction following cancer treatment they … feel that being able to be sexually intimate with a partner is far too challenging.”
‘I’m just so self-conscious about having to poo all the time’
David (not his real name), a 36-year-old husband and father of two, was diagnosed with rectal cancer last year.
The tumour was located about 10 centimetres inside his rectum close to lymph nodes, bladder, bowel and the parts of his anatomy that affect erectile function.
But unlike Ms Essex’s experience, David was given detailed information from his doctor about the impact of surgery and treatment on his sexual function and overall health.
“I was told to bring my will in and make sure my affairs were in order,” he said.
“He [the doctor] couldn’t tell me if I was ever going be able to wee again properly or if I’d get any function back at all sexually.
“They said after six months if it’s not doing anything, it’s probably not going to do anything. It was devastating.”
Surgery was successful for David and his erectile function returned after a few months, but a brief stint wearing an ileostomy bag affected his confidence.
“Having a shit bag as I called it was pretty awful, and I felt pretty unattractive,” he said.
Eventually, David had the stoma reversed but that has left the young dad feeling anything but back to normal, because without a rectum he has limited bowel function and still soils himself. A lot.
“Once the stoma was closed, I was doing a poo up to 40 times a day,” he said.
“Trying to be intimate with that going on, it’s not happening.
“If I think we might be getting jiggy with it, I’d have to prepare by lunchtime that day … to prepare what I eat and then I don’t eat or make sure that I’ve had a shower because I’m just so self-conscious about having to poo all the time. It’s all awful.”
David continues to have ongoing support from his psychologist, psychiatrist and doctor.
“All my treating team and my nurse at Bloomhill, they all quite regularly bring it up [his sex life] as a major factor to consider,” he said.
Lynne’s story ‘not unique’, professor says
University of Sydney professor of medical oncology Fran Boyle said experiences such as Ms Essex’s were not unique, but the urgency of treatment could be one factor that prevented doctors from having a conversation with their patient about the impact of treatment on their sex life.
“I think there are probably situations where cancer treatment happens suddenly,” she said.
“Decisions need to be made very quickly and they are often life and death decisions with really quite complex decision-making and trade-offs.
“We know that under time pressure things that are difficult to talk about, and sex is one of them for many people, is often the thing that is going to get left out.”
Professor Boyle believed there could be greater scope for surgeons to raise the topic with patients, and called for compulsory communication training for them to facilitate that conversation.
She said there was likely to be an improvement in the medical fraternity in the future, with some changes underway within the Clinical Oncology Society of Australia.
“That will include things like monitoring bone health, emotional concerns and sexual health as well, so I think you’ll see an improvement in that area going forward, and we’d love to work with anyone who has access to patients to make that happen,” she said.