After an SCI, some women may want to become pregnant and raise a family, while some may wish to avoid pregnancy and are interested in birth control options.
If a woman has a disability and wants to become pregnant and be a parent, it’s important for her to know that many women who have come before her have done the same. Oftentimes an SCI will not affect her ability to become pregnant, and it certainly won’t affect her ability to be a good parent. Erin Gildner, United Spinal Association’s Director of Chapter Relations, is a mother in addition to having a T-11-12 motor complete SCI. “As a parent, I’ve been able to do everything — sometimes with help, sometimes without,” she says. “My kids are empathetic, more accepting of people who are different. If anything, my disability has enhanced my family. My kids are better human beings.”
If, however, a woman with an SCI decides she does not want children or wants to hold off on having them and is interested in contraceptives, she may not know where to start. None of the four women interviewed were offered any sexual or birth control education during their SCI rehabs (nor did this article’s author). “But we’re paralyzed, so we’re not supposed to have sex, right?” says Jill, a woman with a T-12 complete SCI. “It just seems like a very taboo topic. Like it’s not part of our game plan anymore.”
A woman with an SCI may have to do some research to find a contraceptive that works best for her specific circumstances. Below are several methods to consider as well as some ways an SCI may interact with each of them.
Hormonal Birth Control Pills
Hormonal birth control pills work by delivering hormones that prevent ovulation and/or thicken cervical mucus. They may have side effects that could be concerning for women with SCIs, such as weight gain that may affect transfers, bone density loss, or excessive bleeding/heavy periods.
There are two main types of hormonal birth control pills: the combination pill and the progestin-only pill. The combination pill, often known simply as “the pill,” contains two types of hormones: progestin and estrogen. The pill provides contraception mainly by preventing ovulation. The pill may come with an increased risk of deep vein thrombosis (DVT) or pulmonary embolism (PE), and this risk may be further increased if the woman has other factors that already put her at risk for DVTs or PEs. Considering that SCI is one of these factors, the pill is a method that some women with SCIs may not be comfortable choosing.
That being said, there are women with SCIs that choose this method; the pill is convenient and can help regulate menstruation. Jill uses the combination pill in her relationship with her boyfriend of six years; it provides birth control as well as helps regulate her cycle. “I’m capable of having a baby,” Jill says. “But neither of us want that.”
The other main contraceptive pill is the progestin-only pill, sometimes known as the “mini-pill.” This pill contains no estrogen. It prevents contraception mainly by thickening the cervical mucus so that no sperm may pass through. The mini-pill must be taken at the same time every day for it to be effective. If a woman finds adhering to a precise medication schedule difficult, she may want to reconsider choosing the mini-pill. Irregular menstrual cycles may occur as a side-effect of this method, which might make the mini-pill less than ideal for a woman with an SCI. However, unlike the combination pill, it does not carry a possible risk of DVTs or PEs.
Hormonal Implants
The hormone progestin can also be delivered via an implant. An implant is usually inserted into the upper arm; for women who have higher-level SCIs, there may be concerns about autonomic dysreflexia (AD) during insertion. Tiffany, a woman with a C5-6 complete SCI, says her doctor numbed her arm before inserting her implant to lessen the risk of her experiencing any AD symptoms.
Tiffany describes her relationship status as “extremely single.” She uses the implant to help regulate her menstrual cycle. “My periods were lasting two weeks – not ideal! It wasn’t until about ten years ago that I found out that I could use any hormonal birth control at all,” Tiffany says. “I thought all of them had a risk of causing blood clots.”
With an implant, there is no need to remember to take any pills, which may be a relief for a woman with an SCI who might be dealing with an already crowded medication schedule. A contraceptive implant usually lasts from three to five years. Side effects from an implant are usually the same as or similar to the mini-pill.
Condoms
Condoms come in two forms: male and female (or internal). Condoms are the only contraceptive that also help prevent STIs. Women who have decreased hand dexterity may need to rely on their partners to put condoms on properly as well as to make sure the condom does not slip off or spill during withdrawal. Even if a woman is not the one wearing the condom, it’s important for her to be educated on the proper way to use one so that both partners know what to look for.
Latex allergies may also be a concern for women with SCIs. Fortunately, condoms come in a variety of materials, such as polyurethane and polyisoprene.
IUDs
An IUD, or intrauterine device, is a T-shaped device that is placed in the uterus. IUDs can be either hormonal or non-hormonal. Hormonal IUDs release small amounts of progestin directly into the uterus; non-hormonal IUDs have copper in them and release copper ions, which are toxic to sperm. Hormonal IUDs can last up to five years, while copper IUDs can last from two to ten years. Complications can include pelvic infection and uterine perforation; although these risks are very rare, a woman with decreased lower body sensation might take them into consideration. With a success rate of over 99%, IUDs are one of the most effective methods of birth control.
Misty, a woman with a C-1-2 complete SCI, says she was told by her gynecologist that during the insertion of her IUD she might experience symptoms of AD as well as some cramping and bleeding afterward. Once an IUD is inserted, small, short strings hang just outside the cervix; Misty was told to have the strings checked every month to make sure the IUD was in its proper place. “In the beginning, I had my then-boyfriend or a caregiver check,” she says. “But these days I don’t have a caregiver I would feel comfortable having check, so it goes unchecked.”
For Misty, it was necessary for her gynecologist to soften her cervix before insertion of the IUD. To accomplish this, the doctor used the drug mifepristone – one of the two main drugs also found in what is commonly known as “abortion pills.” The controversial nature of this particular usage of mifepristone can sometimes make the drug difficult to obtain, even if it’s being used for reasons unrelated to abortion. This difficulty did, in fact, cause a delay in Misty getting her IUD inserted. “I want people to know that when abortion rights are restricted, it can affect other areas of women’s health, as well.”
Abortion
Abortion is not a contraceptive, but it can have a place in a conversation about contraceptive choices. Bodily autonomy is particularly important for people with disabilities, and the right to choose to have an abortion is part of that autonomy.
If a woman with an SCI does choose to have an abortion, she may want to attempt to locate a doctor or clinic that has experience with disability. If she needs extra time to arrange for things such as lab tests or transportation to and from appointments, this may be a factor to consider when calculating the time between conception and abortion.
A woman with a disability should be aware of any person or medical professional who may pressure her to have an abortion – unfortunately, there are some in both the medical community and the general population who hold the idea that people with disabilities should not be parents. Whether or not a woman has a child is a personal choice, and only she can know if she’s ready to parent a child and how her disability might figure into that – if at all. It’s her decision to make.
In 2022, the U.S. Supreme Court struck down Roe v. Wade., returning the issue of the right to abortion back to the states. To see the states in which abortion is still legal – meaning the right to have an abortion is either protected or has been expanded – please go to the map at The Center for Reproductive Rights. This map provides detailed information about the status of abortion rights in each state. If a woman wishes to have an abortion but it is not legal where she lives, there are organizations such as Aid Access and Plan C that may be able to help.
Find the right doctor
It is important to try to find healthcare professionals who are willing and able to discuss sexual and reproductive health with someone who has paralysis. “You need to find a doctor you’re comfortable talking to about birth control and sexual relationships, because you have the right to those relationships,” Tiffany says. Whether a woman wants to have children or not, taking care of her reproductive health is just as important as taking care of any other system in her body. “Be a strong self-advocate,” says Erin. “Don’t assume doctors know everything. Do your research and talk to others who have been through it.”
United Spinal Association’s Nurse Information Specialist, Jane Wierbicky, is available to answer reproductive health questions as well as other SCI-related health questions. You can contact her by going to the Spinal Cord Help Desk contact page.
