This is the first post in a series on preventative health care for people living with RA. Today’s post is about women’s healthcare, marking Cervical Health Awareness Month and the coming weeks will explore colonoscopies, endoscopies, bone density test and stress tests.
It is an unfortunate fact that many people with RA have gaps in their primary health care.
When you live with a chronic illness, you are part of a never-ending carnival of doctor’s appointments, tests, more tests and more appointments. RA takes up so much room that taking care of the other parts of your health can fall by the wayside. Another aspect that can cause gaps in preventative healthcare is that many of the screening tests seem designed for contortionists and healthcare providers may not be aware of alternatives to the standard tests. If RA has affected the mobility of your joints, how can you take care of your health?
A Pap test checks for changes in the cells of the cervix, which can indicate infection, abnormal cells or cervical cancer. It is your best defense against cervical cancer. The American College of Obstetricians and Gynecologists recommends you have your first Pap test at 21 or within 2-3 years of becoming sexually active. How often you should have this test on depends on your individual situation, but under normal circumstances it’s usually recommended for every two or three years. However, if you take immunosuppressants, such as methotrexate or the Biologics, it may be a good idea to be tested more often.
Normally, getting a Pap test involves removing the clothes on your lower body and hopping up on an exam table. Once there, you scoot down so your bottom is at the edge of the table and place your legs with bended knees in a pair of stirrups in a sort of frog-like position. Pain, contractures and limited mobility in your knees and hips can affect your ability to get yourself in this position. To find out alternatives, I spoke to Janis Macdonald, NP at the Anne Johnston Health Station (AJHS) in Toronto which specializes in healthcare and other services for people with disabilities.
In it turns out that there is indeed an alternative to the traditional position and an easy one, at that. Janis first learned this procedure from a colleague who had learned it in Australia and described it as follows: “the patient rolls over on their side and moves their top leg closer to the wall. If needed, a staff member can assist with holding the leg. This position allows you to see and access the vagina and it is almost easier to find the cervix this way.” After the Pap test, the health provider will do a “bimanual check, in which they insert one or two fingers into the vagina to check the cervix and ovaries.” This can easily be done with a woman lying on her back, no froggy position needed.
If the results of your Pap test are abnormal, there are a number of options for following up, including another Pap test or a colposcopy. Should you require further testing to investigate concerns about the uterus or ovaries, your doctor may order a vaginal ultrasound. In this procedure an ultrasound probe is inserted into the vagina.
I asked Janis if there were any alternatives to vaginal ultrasounds for women whose mobility issues made such a prcedure difficult. She said that an abdominal ultrasound might be an option, although it is not as accurate as a vaginal ultrasound. However, when mobility is limited, “you do what you can.”
Talk to your doctor about physical limitations that may affect your ability to have a Pap test the regular way. If they are not aware of alternate positions, you can help inform them. If you have financial challenges, you may qualify for free or low-cost Pap test through the National Breast and Cervical Cancer Early Detection Program. Contact them at 800-232-4636. You can also check our Sexual Health site for more information on pap tests and other topics
Mammograms aka "The Squish"
Another important preventative test is mammograms. I spoke to PJ Hamel of our Breast Cancer site about this test and possible alternatives.
It is generally recommended that women over 40 receive a mammogram once a year, although there has been some recent controversy about this. Mammograms are pretty easy and noninvasive, although the actual “squish” can be somewhat painful. PJ suggests that to minimize the pain, you schedule it one week after your period when your breasts are less tender and take an over-the-counter painkiller before the procedure.
I asked PJ to describe how you position yourself in order to get a mammogram. “Imagine a solid wall; that’s the X-ray machine. Stand in front of it, as close as you can; really press yourself face-first to the imaginary wall.” Then you turn your head sideways, looking straight along your shoulder. Next, “imagine there’s actually a hole in the wall where your breast is; press your breast into the hole (the actual plates that grab and hold your breast for the X-ray), so that you’re pressing your body even more firmly against the ‘wall.’ At the same time, one arm will be lifted up over your head, pressing into the ‘wall.’”
That’s impossible for many women who have RA in their neck or shoulders. So what do you do instead?
PJ explains that “an ultrasound is used when an abnormal mass is detected on a
mammogram.” However, an ultrasound can also be used as a screening test. If you have pain or limited mobility that affects your ability to get a mammogram, talk to your doctor about having an ultrasound instead. You should be aware that “a mammogram ‘sees’ a lot more than an ultrasound. An ultrasound, at least for breast cancer screening, is really only good for determining if a mass is a cyst - that’s as far as it goes. It’s not as good as a mammogram for picking up masses to begin with.” Another option is an MRI, as they are “very sensitive to solid masses and can pick up more than a mammogram.” An MRI “is also recommended for women with clinically identified dense breasts (more fibrous and glandular tissue than fat).” Although an MRI is more invasive and expensive, it may be a good option for you. Discuss the issues with your doctor to find out which approach is the best.
Given that many people with RA have gaps in primary and preventative healthcare, it’s important that you advocate for yourself and make sure you get the appropriate tests to maintain the part of your health that is not related to RA. If you have problems with mobility that can affect your ability to have preventative screening tests such as pap tests and mammograms, there are alternatives that can be an important part of taking care of you.
Lene is the author of the award-winning blog The Seated View.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.