Having a healthy sex life is possible for people bleeding disorders. There are other aspects of your life that can impact sexual health, including other areas of your health. Your Hemophilia Treatment Center (HTC) team are great resources and can work with you to help address issues or concerns you have with your sexual health.
This section of Sexual Health covers:
Sexual Health Issues
People with bleeding disorders face the same sexual health issues as those without bleeding disorders. However, if you have a bleeding disorder you may also face some additional challenges. You might have acute or chronic pain from previous bleeds or joint damage. You may have side effects from medications you are taking or other diseases that may have been contracted during the course of treatment. These may include human immunodeficiency virus (HIV), Acquired Immune Deficiency Syndrome (AIDS), and hepatitis C (HCV).
Maintaining sexual health when you have a bleeding disorder means being responsible and understanding the consequences of being sexually active.
Musculoskeletal Issues
People with bleeding disorders often live with chronic pain. It is not unusual to fear engaging in sexual activity because of the pain it might cause or worsen. If you have or have had target joint bleeds in the hips, knees, or elbows, some positions during sexual activity can worsen pain or even cause bleeding.
Sex can also increase the risk of internal bleeding in the deep pelvic muscles which may be hard to recognize. After sex some may experience lower back, abdominal, pelvic, groin and/or upper thigh pain. Some may feel numbness and tingling in the affected thigh if they bleed into their deep pelvic muscles. Many are unable to straighten their leg while laying down or stand up straight. These bleeds are commonly called iliopsoas bleeds.
With bleeds into your deep pelvic muscles there is a risk of artery, vein, and/or nerve damage. This is due to compression of these structures by the swollen muscle. The nerve damage can be permanent if not treated promptly. Deep pelvic muscle bleeds can be limb and/or life threatening and should be considered a medical emergency.
Sexual Dysfunction
Sexual dysfunction can include erectile dysfunction, ejaculation disorders, and painful erections. Erectile dysfunctions can be a side effect of taking multiple medications, some of which might be related to treating HIV or hepatitis C (HCV). Medications may lower testosterone levels and slow libido. Ask your health care provider about the side effects of the medications that you are taking.
Many people experience anxiety or depression due to fears about their bleeding disorder. Some may worry about passing their condition to their partner(s) while having sex. These feelings can also lead to lessening in sexual desire and to sexual dysfunction.
Regardless of the cause, sexual dysfunction can be addressed.
Here are a few strategies to think about:
Finding sexual positions that are easy on your body is important.
Involving your partner in the decision-making process regarding sexual dysfunction may invite more creative intimacy into your relationship.
Bringing up the issue of sexual dysfunction with your health care provider may embarrass you initially. But talking openly to your health care provider is necessary to have a healthy and enjoyable sex life. Sometimes a sexual dysfunction, such as ED is a sign of other medical issues, including undiagnosed heart disease. Sexual dysfunction may indicate that you should have your overall health checked.
Sexual dysfunction doesn't always result from a physical problem, but can stem from a mental health issue, such as depression or anxiety. Mental health providers and sex therapists are great resources to help you address these issues.
HIV and Hepatitis C
In the 1970s and 1980s, many people with bleeding disorders contracted HIV and/or HCV from tainted blood products. As a result, they face major sexual health-related challenges:
- Fear of passing on the virus to their partner(s).
- Lowered libido and increased risk of sexual dysfunction due to treatment side effects.
- Altered options for creating a family.
Prostate Health
People with bleeding disorders should be aware of the sexual health conditions that affect those with a prostate. They should have regular prostate screenings to find an enlarged prostate and prostate cancer. An enlarged prostate, also known as benign prostate hyperplasia (BPH), does not lead to cancer. Prostate cancer is typically a slow-growing cancer when it occurs in people under 60 years of age. Talk with your health care provider about your risk factors and to find out when you should be screened.
Vaginal Bleeding During Sex
For women and those with potential to menstruate, there are many ways your bleeding disorder affects your sexual health. You deserve a healthy, safe, and satisfying sex life. Vaginal bleeding during and after sex is not uncommon even for those without bleeding disorders. If you have continuous vaginal bleeding that goes on for a couple of days or you use more than 2 pads or tampons a day, talk with your Hemophilia Treatment Center (HTC) or health care provider as soon as possible.
Bleeding does not have to stop you from being sexually intimate. But, sometimes after days of menstrual bleeding, having sex with your partner(s) is the last thing you feel like doing. There are other sexual activities that you can consider, as well as other ways to be intimate. Cuddling, massage, holding hands, and verbal affection are examples of other ways to be intimate. Remember to do what is best for you and your body and communicate any needs to your partner(s).
Questions About Sexual Health
You may have some additional questions about sexual health. Below are some of the most common questions people with bleeding disorders have.
Yes, for a healthy person it is safe to have sex when you have a bleeding disorder if you take necessary precautions.
There are different ways to have sex. Some examples include vaginal sex, oral sex, anal sex, fingering, hand jobs, dry humping or genital rubbing, masturbation and the use of sex toys or devices. Remember that a bleed can happen anywhere the blood flows. Sex can involve parts of the body that have a lot of blood vessels, including the mouth, genitals, and anus.
It’s important you work with your partner(s) to find out what works best for you. You can use pillows or blankets to give extra support if needed. The most important thing is to only do what you and your partner(s) feel comfortable doing. Communicate to make sure the sex is consensual (agreed upon by both people) and establish and respect boundaries.
Remember that having sex comes with risks, such as an unplanned pregnancy or getting a sexually transmitted infection (STI). It is important to take precautions to be safe. Using condoms and internal condoms correctly can protect against STIs. If you are concerned about getting an STI, talk with your health care provider or find a location near you to get tested.
Sex is like most other strenuous physical activities for people with a bleeding disorder. It can cause a bleed in any part of the body including muscles or joints.
Some parts of the body are particularly vulnerable to bleeds during and after sex. The signs and symptoms may not be visible immediately. Some more common ones include bruises or hematomas, muscle bleeds in the calf or forearm, or a joint bleed. Signs of bleeding can include pain, limited movement, and swelling.
Those who have a penis should look out for injuries marked by external bleeding, swelling, pain, and discolored urine. Penis bleeds can be serious.
Sex may increase the risk of internal bleeding in the deep pelvic muscles, which may be hard to recognize. After sex some may experience lower back, abdominal, pelvic, groin and/or upper thigh pain. Some may feel numbness and tingling in the affected thigh if they bleed into their deep pelvic muscles. Many are unable to straighten their leg while laying down or stand up straight. These bleeds are commonly called iliopsoas bleeds. With bleeds into your deep pelvic muscles there is a risk of artery, vein, and/or nerve damage. This is due to compression of these structures by the swollen muscle. The nerve damage can be permanent if not treated promptly. Deep pelvic muscle bleeds can be limb and/or life threatening and should be considered a medical emergency.
For women and those with the potential to menstruate, even those without a bleeding disorder, vaginal bleeding during and after sex is not uncommon. If you have ongoing vaginal bleeding lasting a couple of days or needing more than two pads or tampons a day, you may need additional treatment to support your body.
If you experience an injury during sexual activity, stop the sexual activity immediately. Follow your usual medical regime or treatment plan and talk with your Hemophilia Treatment Center (HTC) or health care provider.
The risk is about the same. Any physical activity can potentially cause a bleed, including non-penetrative sex. See the section above for tips.
You may be using hormonal therapy to manage heavy menstrual bleeding. There are several different methods, such as birth control pills or IUDs (intrauterine devices) available. With each method, make sure you understand and follow the directions. For example, you may need to take your medication every day at the same time for it to be effective. If you are not being consistent, you may become pregnant or have increased heavier periods. Talk with your health care provider, and they can help you select the best option for you.
You can consider other sexual activity for you and your partner(s). You can also engage in intimate activities with your partner like sensual massage or cuddling. Connecting doesn’t have to involve sex. If you’re in pain, tell your partner(s).
For most people sex and intimacy is a big part of their overall well-being. Communication with your partner(s) will help you maintain a safe and healthy sex life. And remember, it is okay to ask any questions or bring any concerns to your health care provider.
Yes, you can have sex during your period. What’s most important is that you and your partner(s) are both comfortable with the idea. Penetrative sex can result in increased bleeding. Remember that it’s still possible to become pregnant or get an STI while you are menstruating.
Many women and those with the potential to menstruate with bleeding disorders have periods that last for multiple weeks. Avoiding sex during your period would greatly restrict your sex life. However, depending on your partner(s), it may take some conversations and compromise for everyone to be comfortable with the idea of sex during your period. Experiment with different positions, try having sex in the shower, or use dark towels. Your partner(s) and you should commit to having a sex life that is fulfilling and enjoyable.
Masturbation, having sex with yourself and often by yourself, is completely natural. Making sure nails are cut and lube is used can decrease friction and your chance of causing an injury. Bleeding in the forearm, wrist, and genitals is possible. You may also have a bit of blood in your ejaculate or urine after masturbation. Urine should be clear the next time you pee. If you have ongoing pain, swelling, or blood in your urine, talk with your HTC or your primary health care provider.
No, your risk of contracting an STI is not higher because you have a bleeding disorder. However, regardless of your bleeding disorder, it is important to practice safer sex to decrease your risk of contracting an STI. Read below for more information on how to practice safer sex.
It is normal to be nervous or feel a bit awkward about bringing up the topic of sex with anyone, including your health care provider or HTC team. They are used to having conversations about sex. Health care providers can answer your questions professionally and keep the discussion confidential. They are one of the best resources for information about the impact that your bleeding disorder has on your life. But sometimes bringing it up can be difficult.
At the beginning of your appointment, tell your health care provider that you have some questions for them. If you let them know at the beginning of the appointment, it can make it easier to start the conversation. If you wait too long, it may be harder to ask the questions. It can be helpful to write your questions down before your appointment. This serves two purposes. You won’t forget the questions and, if you’re having difficulty getting the words out, you can always have your health care provider. The most important thing is that you get your questions answered! Social workers at your HTC are another great resource if you have questions about sex.
Safer Sex
Safer sex can mean a lot of things, including protecting against sexually transmitted infections (STIs) and/or unintended pregnancy. Safer sex also means making sure sexual activity is consensual, meaning agreed upon by both people. It is important that partners discuss safer sex before becoming sexually intimate.
Sexually transmitted infections (STIs) can be spread through different forms of sex via sexual fluids or skin to skin contact. The best prevention against STIs are condoms or internal condoms. Preventing STIs is the responsibility of all partners. If you are HIV positive, or have hepatitis B or C, or any other STI, let your partner(s) know ahead of time.
Some partners may be concerned about unintended pregnancies. There are many ways to prevent pregnancy. Talk with your health care provider about what options work for you.
Make sure sex is consensual, meaning agreed upon by all people. Consent is an agreement between all partners to participate in sexual activity. Consent should be freely given without coercion. Consent should be given for any type of sex and should be given every time sex happens before the sexual activity occurs. When communicating consent, all partners should be clear on what type of sex they are consenting to, and any boundaries. All partners have the right to change their minds and stop any activity at any point in time. You never have to do anything you are not comfortable with, and your boundaries should always be respected. You should ask your partner(s) before initiating a new sexual activity and check in about consent regularly during sex, so you are clear about consent. Without consent, any sexual activity (from touching to rape) is sexual assault. Visit the US Department of Health and Human Services’ website for information on sexual assault, rape and consent.
If you want more information about commonly asked questions, please see the videos below:
