Sexual health and rheumatoid arthritis: 'Look at the patient as a whole person'
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In this interview, Iris Zink, MSN, RN, ANP-BC, RN-BC, owner of Lansing Rheumatology and past president of the Rheumatology Nurses Society, points to the necessity of discussing a patient’s sexual health in their overall treatment strategy.
Healio: How do you approach discussing sexual health with your patients who have RA?
Zink: I would say that the patients are very reluctant to discuss the topic, so I frequently joke with the patients about it in my office. I’m lucky because I’ve written so many articles about intimacy that I have them all framed all over the wall. So, while the patient’s waiting in the exam room, they see all these articles I have written and that helps open up the discussion.
In this way, I would say that I bring it up. Additionally, it’s on our new patient evaluation form. We include the question: “Are you having any sexual health concerns?” That sort of starts the conversation.
Healio: Are there medical therapies in RA that have an impact on sexual health?
Zink: The only drug that we use for RA that has a dramatic effect on sexual functioning is prednisone.
Prednisone, because of the fact it can cause hardening of the arteries, if you use it long term or if you already have some underlying atherosclerosis, is going to exacerbate that and blood flow is what’s important for both men and women in order to cause engorgement of the genitals and allow for sexual activity.
None of the other medications that I am aware of that people have reported do anything with their sexual functioning. Most of the time, as long as their inflammation is better their sexual health is better.
However, frequently men who have spinal stenosis with osteoarthritis are taking something like gabapentin or Lyrica, and whether men or women, that interferes with your sexual health because it decreases your sex hormone, decreases your libido. It has a multitude of effects and people don’t know that and nobody tells people that.
It belongs in every category.
Healio: Do you approach men and women differently when discussing sexual health and RA? How do their concerns differ?
Zink: Yes, I would say my approach with men is dramatically different than women.
Men with RA have less sexual health difficulties. It’s still a huge issue, but men with ankylosing spondylitis, psoriatic arthritis, Crohn’s disease or men who are smokers can have the worst issues with sexual functioning. I tend to bring it up in those conversations, especially in men with AS because they are known to have erectile dysfunction because of this disease. Men with really bad osteoarthritis of the spine have bad problems with sexual functioning.
Any time a man is a smoker, I always ask them if they are having any problems with impotence, but I don’t word it in that way. Generally, what I say to men is, “Are your man parts working?” Then that’s a yes-or-no question. And men lie horribly.
So, I ask, “Are they working as well as you’d like them to?” That usually leads to “Well, you know not as much as it used to work and sometimes it doesn’t work at all.”
That opens that whole discussion because we know that smoking can exacerbate impotence as well.
Overall, men tend to be more worried about sexual functioning whereas women tend to be much more worried about fatigue and pain. Fatigue is by far the primary concern and then low desire. Men do not complain about low desire for themselves, ever. It’s always complaining about their partner’s low desire. I just do not find it to be a man’s complaint.
My approach to women is vastly different because in women, it’s more of a fatigue issue and it’s a huge loss. Women’s sexuality tends to be related to their appearance and how they feel about themselves and their energy level and how they feel about their partner. If they don’t like their partner, they don’t feel like their partner’s helping out around the house, they’re less likely to engage in sexual activity or have intimacy with that partner.
When you’re diagnosed with an autoimmune disease, that alters the balance between partners. Suddenly, one partner that maybe used to handle everything in the household – the dishes, the groceries, the laundry, the bills, everything – is diagnosed with a chronic disease. They become profoundly fatigued; the other partner may not recognize that they may need to help with the other things. Then the partner diagnosed with RA may try to be a superhero. It’s just wearing themselves down completely trying to get everything that was ‘normal’ activities done and have no time or energy left for their partner.
There’s this huge dynamic to this. There’s a whole bunch of grief and loss. They ask themselves, ‘What does this mean, I’ve been diagnosed with a chronic condition?’ ‘Am I going to be in a wheelchair?’ ‘Am I going to have to quit my job?’ ‘Is my husband going to leave me?’ or ‘Is my partner going to leave me because I’m not the person they married?’ ‘Am I not going to engage in sexual activity like I used to?’
There’s all of these thoughts running through the person’s head when they’re diagnosed with RA that did not happen before they were diagnosed with chronic disease. You have to acknowledge that there’s a lot of grief, a lot of loss, there’s a lot of anxiety. There’s this dynamic shift within the relationship and that’s hard on a lot of relationships.
I have had multiple men tell me that their wife has been diagnosed with RA and they just stopped touching her because they knew she was in pain. They knew she was exhausted, and they thought asking for sex was not appropriate at that time, but the wife might just need some kind of normalcy. Sexual activity is normalcy. Then the wife thinks ‘he doesn’t find me attractive’ or ‘my partner doesn’t find me attractive anymore because of the chronic disease.’ Unless they’re really good communicators, then the whole relationship starts to break down.
Healio: What strategies do you recommend for improvement of quality of life as far as sexual health in RA? Is it lifestyle management, mental health or pharmacologic treatment?
Zink: It’s absolutely both. Unfortunately for women, there’s not a lot of pharmacological treatment because there’s just nothing that causes women to achieve orgasm. So, the biggest thing is making sure that their underlying health is good.
I check a hormone called DHEA in my new patient lab and you would be floored how many 30- and 40-year-old ladies are walking around with almost no estrogen-producing hormone or testosterone-producing hormone in their bloodstream. It’s because our diets are so horrible.
The first thing I do is track that with all their other labs when I’m trying to diagnose someone with RA, I check that hormone. It’s a simple, easy test. It comes back. If they’re a 50-year-old woman and it comes back at 30 and it’s supposed to be 150 for her age, we’ll have to work on this.
The hormone is not just your sex drive, it’s your vitality.
In the end, it’s about normalcy. It’s about providing normalcy, which requires that you give people back their ability to have intimacy and whatever intimacy means to them. A lot of women cannot stand penetration anymore; penetration’s too painful for them. So, it’s whatever intimacy they can tolerate. As we age, our sexual health changes naturally with or without autoimmune diseases so it’s whatever intimacy you can put out.
So, when you mean intimacy are you talking about penetration, are you talking about oral sex? What kind of intimacy are you trying to get back to? What does intimacy mean to you?
Healio: When do you have to refer your patients to other providers? When can a rheumatologist handle this on their own?
Zink: I am absolutely, 100% passionate about this. As a rheumatology nurse or rheumatology practitioner or physician or PA or pharmacist, your job is to bring it up, and make it an OK topic for the patient. Then you have to refer out, because we don’t have the time, we don’t have the education and we don’t have the resources to deal with it.
It is a complete team approach. There are sex counselors who are guiding people through intimacy, which sounds really intense, but there’s a huge spectrum of care in this area. There are people guiding the couples through sexual health and intimacy. There are social workers; there are marriage counselors; there are physical therapists and occupational health people that specialize in sexual health, too, such as pelvic floor retraining for women. A lot of women have pain with intercourse and pain with intimacy; it’s dealing with that.
Gynecology comes into play by making sure there’s no secondary reason why you’re having dysfunction. For men, it’s urology, which is unfortunate because many urologists just don’t care about sexual health. They’re more interested in prostate health and urinary stuff. Finding a physician who specializes in male sexual health is important for referrals.
There’s a whole bunch of people out there. I have two physical therapists I refer to frequently that deal with pelvic floor issues and bladder control issues and things like that. It’s a huge life changer for women who go through that therapy.
Healio: What do you want to say to other providers who treat RA about this topic?
Zink: The thing that’s frustrating for me is as I’ve lectured around the United States is people come up to me after my talk and say, ‘Well, I’m not going to talk to my patients about sex because I don’t know anything.’ And yet, they’re moms, they have children and I respond, ‘Well, clearly you know something about sex because you got pregnant.’
The patients do not expect us to be experts or ‘sexperts,’ if you will. Patients just want us to recognize they are spiritual beings, that they are physical beings, that they have mental issues and that they have sexual issues. You have to treat the whole patient. And if you’re not treating the whole patient, then they’re never going to get better.
You just can’t keep treating RA and think that lives in a vacuum. The stressors they are having at home 100% affect their RA, we know that. If you’re not addressing their sexual health and they’re having relationship issues, then that’s affecting their stress level and their RA is not going to be under control. We as providers have to look at the patient as a whole person and ensure that they’re looking at their spirituality, and their mental health, and their physical health and their sexual health. It all goes together.
I can’t tell you how many patients I’ve had, who come in over and over again and say my RA is not better. Finally, you get frustrated with them and may need to ask, ‘what’s really going on here in your life? Tell me what’s going on at your house with your kids, with your job, with your relationship ... Let’s start the conversation there.’
That’s when they start bawling in your office and you have to say, ‘No wonder you’re not better when you have that much stress going on all the time. How could you be better?’
If we can get them some help with those stressors, maybe magically your medications are going to start working. Sometimes they’re not taking their medications because they have mental health issues or they have financial issues or their husbands are ‘sicker than they are’ so they are spending the money on their husband’s medications and you don’t find that out unless you ask them ‘what’s going on?’
It starts with asking those simple questions.
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