KEEPING HEALTHY

Introduction

Sexual health is important throughout our lives. The hormones we associate with sexual health affect our our health risks as we age and so it becomes increasingly important to undergo regular screenings for cancer and other health issues to keep healthy. There may be barriers to accessing these screening tests for people with disabilities, and these more common concerns of daily life that aren’t disability related can be easily overlooked, especially when already dealing with ongoing SCI complications. This chapter describes the common healthcare concerns that are screened for and offers advice and information to help you discuss these tests with your physician to ensure you are receiving the care you need.

Each section highlights who the information is most likely to apply to, unless it applies generally across most people with spinal cord injuries regardless of gender, sex, or anatomy.

What’s Different Now?

Spinal cord injury can put you at a greater risk for many health issues as you age, and may affect your ability to detect and get care for your life-long sexual and reproductive healthcare needs, such as cancer screenings and cardiovascular risk. SCI also affects things that are of greater concern as you age, such as bone density. It’s important to know what to look for and what screening is needed so you can work with your healthcare team to ensure you can be as healthy as possible throughout your life.

Menstruation

For women and other people assigned female at birth who are in your reproductive years and have a spinal cord injury, managing your menstrual cycle may look or feel different than before your injury, and may interact with SCI complications like spasticity, pain and autonomic dysreflexia (if you are already at risk for it).

Many people with SCI who menstruate find their period is a time where they experience disruptions in their SCI-related complications such as more pain and spasticity, so you may need to talk to your doctor about proactively managing your pain during that time. Many find the same approaches to dealing with menstrual cramps work post-injury, such as heating pads, a warm bath, anti-inflammatories and exercise or movement. Take caution when using heat sources on your skin if you do not have sensation – check your skin frequently and never fall asleep on a heated pad or water bottle. Burns can and do happen!

“Period poops” are an issue for many people during their period, so you may also find that your bowel routine is altered by your period and might need a different approach during that time.

Depending on your level of SCI or other disability, you may find that your ability to transfer, and your hand function may play a role in how you choose to manage your menstrual cycle – for example, using tampons vs. pads, or choosing to avoid periods altogether.

Menopause

This is an area that needs more research specific to women with SCI. Some research shows that the onset of menopause is similar for those with SCI and the general population. The largest published comparison study of individuals with SCI who experience menopause to the general population indicated that there may be some differences in the way that people with SCI report certain symptoms.

While It’s not clear if menopause is different for most individuals women and those assigned female at birth who live with SCI, what we do know is that people with SCI do experience menopause symptoms, and they can sometimes interact with SCI complications. For example, individuals who are likely to experience menopause may find their skin’s resilience can decline around this time, becoming drier and more fragile. Because people with SCI are more vulnerable to skin breakdown and pressure injuries to begin with, this symptom of menopause may change the way your skin responds to pressure, you may need to be more vigilant about skin checks every day, and discuss how to protect fragile skin with your doctor or an outpatient wound nurse.

Check out the additional resources on right and read Ask the Spin Doctor: Menopause to get the lowdown from Dr. Viet Vu on what to expect from menopause while living with spinal cord injury.

What Can I Do About It?

Become aware of the unique issues and complications related to your spinal cord injury as you age and keep up with the recommended screening tests to help you stay healthy and avoid common health issues throughout your life.

Read on to learn more about recommended screenings and when and why to get screened. The information below is sorted by health issues/risks most people should be aware of, and health issues/risks that apply more to men and others assigned male at birth, or women and others assigned female at birth.

Cardiovascular Disease & Metabolic Syndrome: 

Persons with SCI are at a greater risk for cardiovascular disease and metabolic syndrome. Your risk increases with age, level of injury and severity of injury.

Metabolic syndrome: A cluster of conditions that occur together increasing your risk for cardiovascular disease, type 2 diabetes and stroke. Metabolic syndrome is defined as having 3 or more of the following traits:

• a waistline that measures more than 35 inches (89 centimeters) for women
• high triglyceride level (a type of fat in your blood),
• low “good“ cholesterol, called HDL cholesterol,
• increased blood pressure, and
• increased blood sugar.

These can be measured by your doctor. Testing should start earlier for people with spinal cord injury even without obvious signs. Speak with your doctor about when testing should start for you.

Bone Density:

Spinal cord injury puts you at higher risk for osteoporosis. Please talk to your doctor about when testing bone density might be right for you. You can read more about the Dual-energy X-ray absorptiometry (DXA) bone density test and how to prepare for the BMD test. Declining bone density means that bones may be more fragile and vulnerable to fracture.

Individuals who experience menopause (declining estrogen levels after mid-life) have an increased risk for osteoporosis, and so should discuss these combined risks of osteoporosis with menopause and spinal cord injury with a primary care physician. 

Skin Health:

After SCI, you may not have sensation in your genital areas, which can result in pinching or injury due to constant sitting. It’s important to do skin checks frequently, for example, once a day or every other day, to know whether your skin on these delicate areas is healthy.

Lack of air circulation over the skin of your groin area due to a seated position can lead to skin irritation or rashes such as “Jock Itch” or groin rash. This can be prevented by keeping the skin clean and dry – drying completely after bathing, and keeping clothes dry and free of moisture. There are some cushions such as Supracor Stimulite or the Ride Custom 2 that enable air circulation which can also be helpful. Rashes themselves can be cleared up with anti fungal ointments prescribed by your family doctor.

• For individuals with cervixes, promoting air circulation and avoiding dampness near the vulva is an important part of maintaining vaginal health and preventing yeast infections which cause unusual discharge, can be very itchy if you have sensation. These infections may also be a potential cause of AD if you are at risk for it.
• Pinching of the genitals can also be a potential trigger for Autonomic Dysreflexia, so keep in mind when you transfer to and from your wheelchair if AD is a concern for you.

What Can I Do About it? For men and others assigned male at birth

Testosterone:

Low testosterone (hypogonadism) is quite common (about 40%) in individuals with SCI. The most common causes for low testosterone are: obstructive sleep apnea, multiple concussions or brain injury, and/or opioid use. It is also commonly seen with cardiovascular disease, diabetes, metabolic syndrome and other chronic illnesses.

Common symptoms are: low sexual drive, fatigue, foggy brain/ low mood, poor strength and low sexual drive.

Testosterone levels can be acquired through blood testing. Speak to your doctor if this is a concern for you. Typically we suggest looking at total and bioavailable testosterone levels along with FSH, LH, TSH, prolactin. Testosterone levels can be replaced to normal by taking testosterone, but if you wish to be a biological father, other medications need to be used instead to increase your blood level of testosterone without affecting your fertility.

Colonoscopy

Colon cancer risk is higher among individuals with penises as they age, and those with SCI may have difficulty detecting the warning signs of colon cancer because of neurogenic bowel and bowel programs. Colonoscopy is a test used to screen for colon cancer that is strongly recommended for individuals with penises over 50, or for people who are in higher risk groups.

Colonoscopy requires your bowel to be completely empty using a bowel prep solution that moves your bowels repeatedly over a short period of time. It requires a lot of time spent on the toilet which can pose a risk to your skin, and may increase symptoms of AD due to repeated bowel movements. It’s a good idea to talk to your physiatrist or outpatient rehab nurse before you undergo bowel prep to know how to do so in a manageable way.

For more information on why colonoscopy is so important and for whom, check out this Spin Doctor article by Dr. Karen Smith from SCI BC’s Spin Magazine, Summer 2024 (PDF download).

Routine Screening Tests

Screening is an important part of your overall health and can help to identify health risks early enough to treat or intervene. As a person with SCI, it’s important to talk to your doctor about screening tests if your doctor hasn’t recommended them already.

• • Prostate Cancer Screening: Screening typically begins at age 40 if there are family risk factors, or age 50 otherwise. It’s important to learn about the basics of screening, causes and prevention.
  • Digital rectal exams (DRE): A DRE is typically done as part of your annual physical exam. The purpose is to check for prostate enlargement or other abnormalities. A DRE is done as a baseline typically with PSA blood work prior to the initiation of Testosterone replacement therapy.
  • Prostate specific antigen (PSA) blood work: check at age 40 for a base-line level or prior to starting on testosterone replacement therapy. Please note: ejaculation, digital stimulation for bowel care should be avoided for at least 3 days prior to the test.
  • Breast Screening: Although the numbers are significantly less in individuals with penises (vs. individuals with cervixes), you can also be at risk for developing breast cancer. The risk increases with age. Please see this link for further description of your risk factors and the symptoms.
  • Testicular screening: Testicle self-exams are recommended to be done monthly, preferable after a warm shower or bath. These simple exams can help you detect lumps or abnormalities of your testicles early and reduce your risk of testicular cancer. If you have lower hand function from quadriplegia, a partner or family doctor can help with testicular exams.

WHAT CAN I DO ABOUT IT? For women and others assigned female at birth

Cervical Cancer Screening:

Cervical screening is done to detect the early signs of cervical cancer. The BC Cancer Agency recommendations state that individuals with cervixes between the age of 25-69 who are sexually active (even they if have received the HPV vaccine) be screened every 3 years.

In BC, you can now request home cervical self-screening kits for Human Papilloma Virus (HPV) which are responsible for most cases of cervical cancer. This new test may be easier to get and more accessible for some people with disabilities. It can indicate whether you need to get further testing for cervical cancer or pre-cancers.

Breast Exam

The Canadian Cancer Society no longer endorses breast exams for women and those assigned female at birth who are of low risk of breast cancer (ages 40-74); however, they do recommend that ALL people assigned female at birth who have breast tissue are familiar with their breasts by paying attention to how they look and feel. Any changes can be discussed with your doctor. To familiarize yourself with your breasts, a self-breast exam can still be used as a guide.

Note: should your hand function limit your ability to do this exam for yourself, it could be done by your partner and/or family doctor.

Mammogram

A mammogram (or mammography) is another test to detect changes in breast tissue to assist in detecting breast cancer earlier. This test can also provide information about your breast tissue density. BC Cancer recommends mammography screening to begin at age 40,  but screening recommendations are also based on your family history. Check out this Decision Aid from BC Cancer to help you understand what the guidelines say about screening for you, or look for screening guidelines from your provincial or state cancer screening experts. 

In the past, mammograms have been a challenge for wheelchair users as mammogram machines have not always been wheelchair accessible, however mammogram clinics in BC are generally wheelchair accessible, and a wheelchair accessible mobile mammogram clinic tours BC to bring screening mammograms to smaller communities. Make sure to mention when you book an appointment at a clinic near you that you use a wheelchair, and whether you are able to stand to bear weight. The clinic booker may also ask some questions about your wheelchair to make sure their mammogram machine is the right fit.

Check out SCI peer and wheelchair user, Kirsten’s story about how to get a mammogram in BC:

My Role

Inform yourself about how you can best look after your health. Know how your risks are higher for common medical conditions and discuss them with your physician. Many family physicians may not be aware of SCI-specific concerns about screening tests such as mammograms, or risks that are higher for SCI than the average, such as osteoporosis and cardivascular disease. You can use this chapter as a guide to talk with your physician about how to stay healthy and what screening you should consider and when.

Many screening tests require preparation or mobility that you may not have – your role is to ask a trusted healthcare professional for help. Physiatrists, outpatient rehab nurses and your family doctor may be ideal partners to assist you with an exam, or to help direct you to a screening facility that is accessible. If in doubt, ask! For women and others assigned female at birth, if you can’t physically get help for breast self-exams, mammograms or cervical cancer screening, learn where the resources are in your community and keep on top of regular care for your sexual and reproductive health.

Who Can Help Me?

Your Physiatrist (rehab medicine specialist) is the person to talk to about sexual and reproductive health concerns where they overlap with your spinal cord injury concerns, such as bone density concerns, discussing childbearing and your SCI, or managing your bladder during sex or pregnancy, etc. If you don’t have a Physiatrist in your community you can ask for a referral to GF Strong’s Outpatient SCI Clinic if you live in BC or the Yukon.

A primary care physician or nurse practitioner (often called a GP or NP) is your go-to person to monitor any sexual or reproductive health concerns you may have related to preventing chronic diseases like cardiovascular and metabolic disease, contraception, reproduction, cancer screenings, bone density, etc. You do not need a referral to see a family physician, and family physicians are required to refer you to specialist clinics or physicians (e.g., urologist) to address issues beyond everyday management and wellbeing. If you do not have access to a family physician, they are also available free via telehealth on 811 HealthLink BC and through other services.

Individuals with cervixes can seek help for everyday sexual and reproductive healthcare you can’t get from your family physician from The Access Clinic at BC Women’s Hospital. This clinic offers gynecological health services from contraception consultation and implantation to cancer screenings. You can self-refer or have your family physician refer you.

SCI BC’s Infoline is a wealth of information on how peers have dealt with common health issues and medical tests. You can reach the Infoline Monday-Friday 9am-5pm, at 1-800-689-2477 or info@sci-bc.ca.

Conclusion

Accessing these routine screening assessments are essential for keeping healthy for all people with spinal cord injury and similar disabilities. While accessibility can make these tests seem daunting for people with SCI, it’s important to persist in making sure you get the recommended screenings for your age, body and history. This information can help you prepare and feel proactive in your health and don’t hesitate to reach out for help.

Resources

Online

About the DXA Bone Density Test - Prohealth Vancouver

Bone Density After A Spinal Cord Injury - Spinal Cord.com

Early Identification of Cardiovascular Diseases in People With Spinal Cord Injury - Archives of Physical Medicine and Rehabilitation (PDF)

Health Considerations in Spinal Cord Injury: A Handbook for People with SCI - University of Louisville 

Preparing for the BMD Test - Prohealth Vancouver

Questions to Ask Your Doctor Prior to an Appointment - Shepherd Centre (PDF)

Resources for Individuals with Penises

Online

Heads Up Guys- managing and preventing depression in men - University of BC

Breast Cancer in Men - Canadian Cancer Society

How to do a Testicular Self-Exam (Slideshow) - Kids Health.org

Men's Cancer: Prostate - BC Cancer 

Monthly Testicular Self-Exams - Testicular Cancer Awareness Foundation 

Tests and Procedures: Digital Rectum Exam (DRE) - Canadian Cancer Society 

Videos

Check out the Keeping Healthy Video Playlist for individuals with penises.

Resources for Individuals with Cervixes

Tools

Tina - Adaptive applicator for tampons, designed for people with decreased hand function.

Online

10 Mammogram Questions for Wheelchair Users - Word of Mouth Mammogram e-Network

Breast Self-Examination - Healthlink BC

Cervical Cancer Screening: FAQs - BC Cancer Agency

Cervix - BC Cancer Agency 

Guidance: Breast Density - BC Cancer 

It's Not Easy, But You Must Get Your Mammogram - Sheri Denkensohn-Trott, New Mobility magazine

Wheeling Through Menopause - Paula M. Larson, New Mobility magazine

Osteoporosis, Menopause, and Disability - June Price, New Mobility magazine

Menopause Characteristics and Subjective Symptoms in Women With and Without Spinal Cord Injury. Kalpakjian, Quint, Bushnik et al. Archives of Physical Medicine and Rehabilitation. 2010. (Free full text)

SCI Forum Report: Women and SCI - University of Washington

Who Should Get A Mammogram? - BC Cancer

Women with Disabilities Have Sex. Why Are Their Sexual Health Needs Often Ignored? - White Coat, Black Art, CBC

Videos

Reproductive Health for Women with SCI video series - UAB School of Medicine

Check out the Keeping Healthy Video Playlist for individuals with cervixes.