It turns out not talking about sex in the doctor’s office might lead to a worsening problem in the bedroom
Justina’s* pain had become so severe she hardly had the energy to even sit upright in bed.
She had been told she had inflammatory arthritis, or fibromyalgia, depending on which rheumatologists she spoke to.
In the space of a few months, she’d gone from running around with her children to being unable to get out of bed in the morning because of her extremely painful joints.
Her husband, who was growing increasingly frustrated with her, didn’t understand this mysterious illness which caused constant pain and lethargy.
Was she using her symptoms as an excuse to not do so much work around the house? Was she even sick? And more importantly to their relationship – why did she no longer want to be touched by him?
Justina, who was in her early 30s at the time, soon realised her mobility problems meant she was unable to have sex with her husband or herself – at least in the way she knew how – without being in excruciating pain.
But amid her diagnoses and new medications, the topic of sexual function was never something her doctors raised with her.
By the time she finally had the confidence to ask her rheumatologist about the problems she was experiencing in the bedroom she realised it was far too late.
Her marriage of nearly a decade was over.
Unfortunately for patients with severe arthritis, Justina’s experience of sexual dysfunction is not unusual.
As I started to interview arthritis patients for this feature, I was overwhelmed by how many responses I had from patients claiming their problems of sexual function remained unaddressed after years of seeing different doctors.
And despite very little study in the area of sexual dysfunction in rheumatology patients, the stories of these patients weren’t the exception – they were the rule.
The complexities of how many arthritis patients suffer from sexual dysfunction, or when in the disease progression it develops, remain unknown.
Some previous studies, which compared the sexual function of people with inflammatory arthritis with control groups found erectile dysfunction in men, and female sexual dysfunction, was consistently worse in patients with inflammatory arthritis compared with the general population.
And it’s not just one thing which is causing sexual problems. The impact of arthritis on sexual function is often measured by frequency of sexual activity, desire, lubrication, anorgasmia, erectile dysfunction, fatigue, pain, sensation, orgasm, and overall satisfaction.
In addition, a recent Australian study published in Arthritis Care and Research, which analysed sexual dysfunction in inflammatory arthritis patients, found that while sexual function problems have a high impact on patients’ lives, the issue is not well-managed in a clinical environment.
Professor Andrew Briggs, a co-author of the study and physiotherapist in the rheumatology space, said problems of sexual function in arthritis patients were multi-dimensional.
“There’s going to be biological factors, pathology, and the pharmacology of the medication, but also the patient’s social environment and psychological wellbeing – and the impact of the disease on those factors,” he said.
Pharmacological disease management can be a culprit in causing sexual dysfunction such as erectile dysfunction and anorgasmia.
Patients with chronic conditions causing frequent pain endure problems of mobility which extend to their ability to engage in sexual activity.
But an individual’s sexual function is as much psychological as it is functional.
One study found between 31% and 76% of rheumatoid arthritis patients were experiencing problems of sexual dysfunction because of stress and anxiety resulting from their disease.
The way a patient feels about their disease can also impact his or her sexual function. Some arthritis patients say their body-image makes it difficult to have the confidence to be with a partner sexually.
There was also consensus among experts that the experience of patients was unique and varied according to age, sexual orientation and whether or not they had a partner at the time of diagnosis, Professor Briggs said.
SLEEPING IN YOUR PATIENTS’ SHEETS
Arthritis patients who have had their fatigue, joint pain, swelling, and reduced mobility treated by doctors say it would be helpful if health professionals could also talk about how their disease would impact their sexual relationships.
But for patients who already have a range of complicated health problems, how important is the ability to have enjoyable sex with a partner?
The answer would seem simple enough – people with chronic disease want to be able to take part in life the same way those who are illness-free do.
For some patients, like Alex*, having a rheumatologist who didn’t talk about sexual function became a catalyst to change specialists.
“I had been under the care of a particular rheumatologist for years and so when I first became sexually active, I spoke to them about how it might be different for me and wanting to know about contraception,” she told The Medical Republic.
“I was shocked that their reaction was so negative. The only advice they gave me was: ‘Talk to your GP about that.’
“Having that experience made me realise …You know what? I’m going to die with this condition, there’s no cure, I’m going to have this disease until the very end of my life and if this is a specialist that can’t talk me through something as basic as sex, I need to be able to find someone who can support me in that way.”
So, Alex, feeling let down by one rheumatologist, set off to find another who she could talk to about her sexual dysfunction.
It turned out to be harder than expected, with many specialists avoiding the problems she raised or referring her back to general practice.
After some time, she found a doctor who she felt comfortable to bring up her sexual problems with. But just because she felt she could finally raise the issue didn’t mean she received helpful responses. The conversations were often general and focused more on daily function than how a lack of function affected her relationships.
“We talk about life roles and the ability for someone to be a parent, or to work, or to study but in all my years the direct issue of sexuality never comes up, unless I bring it up,” Alex said.
“To be fair to the rheumatologists, I think they have such a hard job managing this disease that I can understand why that stuff gets overlooked.
“If you have a patient like me in severe pain or feeling depressed because of their condition, or they can’t work, or they are struggling to parent their kids – you would think that that’s going to be a priority over maybe thinking about more secondary problems, like a sexual relationship with a partner.
“I’m not critical. I think contextually there are higher priorities, but it would still be helpful to have some kind of conversation in this area so it doesn’t feel like we are alone in this,” she said.
Some patients interviewed said they felt sexual function was a consulting room taboo and, by extension, they felt pressured to keep up a “normal” sex life regardless of their discomfort.
Some men and women also felt the need to appease the sexual desires of a partner, even if it caused them pain, while others considered themselves “lucky” to have a partner who was happy to share a dry spell in the relationship – up to 16 years in some cases.
“I find this the saddest part – that some people think they are ‘lucky’ that they don’t feel pressure to have sex with their condition. This is a real shame, after all, almost every person living experiences intimacy or desires it during their life so to have this whole part of your life taken away from you is really upsetting,” Alex said.
Of the patients interviewed, most said they would feel comfortable talking to a GP about problems of sexual function because they felt clinical consultations with rheumatologists were more concerned with disease management.
But if the problem is so widespread in arthritis patients, why is there so little emphasis on this area of patient care?
TIME IS THE ENEMY
For rheumatologists, it’s not that they were uncomfortable talking about sexual function, but for many, they just don’t have time to address these complex problems, Professor Susanna Proudman, Medical Director of Arthritis Australia, said.
“The reality is that patients come at infrequent intervals and are seen at 20 minutes on average, sometimes less. There are already a large number of things which have to be covered off in that time, such as monitoring toxicity concerning drugs, finding out any problems they might be having and reviewing test results,” she said.
Rheumatologists already spent a lot of time talking to patients about contraception and the mechanics of sex involved in planning pregnancy, however, the specific problems involved in intimacy and sexual enjoyment in relationships often took a back seat.
Often this is for good reason, as Professor Proudman points out, it’s more appropriate for a clinician to address a problem of chest pain and shortness of breath over a query of sexual satisfaction.
“The goal for the doctor in a consulting scenario is to hear the goals of the patient in an open-ended enquiry at the beginning of the consultation and then they do their best to address those as well as all the other requirements that are pre-ordained,” she said.
But, unless the patient brings up a problem of sexual dysfunction at the start of the consult, it’s unlikely it would be addressed during the appointment due to time constraints.
However, when an issue of sexual function is a problem for patients, getting them to talk about it in a consult can be difficult.
STARTING THE CONVERSATION
One tool Professor Proudman’s clinic finds useful in starting a conversation with patients about sexual function is the vital activity and lifestyle index, which patients fill out before each visit.
The form allows patients to discreetly place a tick next to any box which lists an impact of their disease – one of which is sexual function – so their clinician is aware of the problem and might be able to raise it during the visit.
At times, problems of function might be referred to allied health professionals, such as a physiotherapist, who might be able to look at sexual function through the lens of overall bodily function.
As a physiotherapist, Professor Briggs said he could often talk about sexual function with patients during a general chat about ability.
“Sometimes patients will initiate it themselves, but I would say that’s far fewer than those who will disclose a problem if you ask them first,” he said.
While it may require some rapport, patients said they appreciated when the questions were raised directly rather than indirectly by their health professional.
“Talk to them about how their disease will affect them and leave the invitation open if they wish to talk about any of it,” suggested Professor Briggs.
“I would say ‘Think about your functional problems and how we might address them’.”
Another important tool to start the conversation might be inviting partners of patients to a consultation to talk about what arthritis meant for the person being diagnosed.
Having this conversation openly may help a partner understand the limitations of the diagnosis of their loved one and make them more willing to listen to functional problems their partner might have.
“Relationships are impacted, but the nature of the impact is very much dependent on the partner’s understanding of the disease and being on board with how to manage it. Those who are on board often find it’s relationship strengthening,” Professor Briggs said.
Health professionals agreed that a lack of resources for both patients and health professionals about sexual function made it hard to give long-term advice to patients.
Also, a “one-brochure-fits-all” approach would not provide an appropriate solution for dealing with sexual function.
A variety of resources specific to age, diagnosis, relationship status, and even sexual orientation would be needed to reflect the diverse spectrum of sexual experiences.
Despite many patients who struggle with sexual function, it’s not all bad news. Some patients, especially those who were diagnosed early in their life, said they had taken their disability in their stride when it came to sex.
Tina*, who was diagnosed with inflammatory arthritis at a young age, said she always chose to be with supportive partners who made her feel comfortable in exploring what worked, despite her condition.
“I didn’t know anything different and in a lot of ways I’m very comfortable with who I am, and what my body can do,” she said.
But despite her self-education on all things sex, she admitted it was not easy. Growing up she had nobody to talk to who shared her experiences and the sex lives of her friends were unlike her own.
There are some limited resources available online from consumer advocacy groups such as CreakyJoints which explains sex positions which might relieve some pain experienced during intercourse.
Arthritis Australia also provides patients answers to some frequently asked questions about sexual function and how to make intercourse with a partner less painful.
But these online blogs are scarce, and few are written by health professionals.
Tina wishes one of her health professionals would have been there to accompany her in working out what sexual function meant for someone with her condition.
“It would have been nice to have a helping hand somewhere along the way.”
*Names have been changed for privacy reasons
